Caring for People with Intellectual Disability: What Every Clinician Needs to Know

People with intellectual disability represent approximately 2% of the Australian population, yet they experience some of the worst health outcomes of any group — with a life expectancy 27 years shorter than the general population and twice the rate of preventable deaths. 

In this episode, Host Dr Gavin Nimon (Orthopaedic Surgeon)  is joined by Dr Hannah Wu, GP and consultant with the South Australian Intellectual Disability Health Service (SAIDHS), and Stephanie Searle, OT and Service Manager at South Australian Intellectual Disability Health Service, to discuss the practical clinical knowledge every health professional needs when caring for this population. 

Topics include:

• Communication strategies and person-first versus identity-first language
• Consent, capacity, and the role of guardianship
• The HELP framework for assessing behavioural change
• Diagnostic overshadowing and cognitive bias
• Psychotropic prescribing, chemical restraint, and NDIS reporting obligations
• The Comprehensive Health Assessment Program (CHAP) and relevant MBS item numbers
• Screening, immunisation, and preventative health considerations

Suitable for GP CPD, junior doctor education, and any clinician/ Health Professional seeking to improve care for this underserved group.

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Transcript

Dr Gavin Nimon: 0:29

People with intellectual disability are amongst the most medically underserved in Australia. With about one in 50 Australians living with an intellectual disability, whatever field of medicine you end up working in, you'll be involved in their treatment. And yet, as a group, they experience markedly poorer health than the general population. They're admitted to hospital far more often than the average Australian, and a large share of those admissions are for conditions that could have been prevented. On average, a person with intellectual disability will die many years earlier than their peers, frequently from causes that were entirely treatable. When Australia's Disability Royal Commission examined the evidence, it concluded that it was not a series of isolated failures, but systemic neglect. What makes this such an important topic is that very little of that gap is inevitable. A great deal of it comes down to the things within our control as

clinicians: 1:15

how we communicate, how we recognize illness in a person who cannot easily describe it, and how we adjust our usual approach to care. These are learnable skills, and they are the focus of today's episode. Good day and welcome to Aussie Med Ed. The Aussie style Medical podcast a pragmatic and relaxed medical podcast designed for medical students and general practitioners where we explore relevant and practical medical topics with expert specialists. Hosted by myself, Gavin Nimon, an orthopaedic surgeon, this podcast provides insightful discussions to enhance your clinical knowledge without unnecessary jargon. I'd like to start the podcast by acknowledging the Kaurna people as the traditional custodians of the land on which this podcast is produced. I'd like to pay my respects to the elders, both past, present, and emerging, and recognizing their ongoing connection to land, waters, and culture. I'd like to remind you that all the information presented today is just one opinion, and there are numerous ways of treating all medical conditions. It's just general advice and may vary depending upon the region in which you're practicing or being treated. The information may not be appropriate for your situation or health condition. And you should always seek the advice from your health professionals in the area in which you live. today we're talking about caring for those with intellectual disability. This is a topic some distance from my own field of orthopaedic surgery, and it's precisely why I wanted to cover it. Caring for patients with intellectual disability is something that reaches into every area of medicine, yet it remains an area in which most of us receive very little formal training. To help us address that, I'm joined today by two guests who work in this field every day. First up is Dr. Hannah Wu. As a physical health consultant with the South Australian Institute of Disability Health Service part of the Northern Adelaide Local Healthcare network, she's a GP by background, and she brings that primary care lens to the health of people with intellectual disability. She graduated from the University of Adelaide in 2015, and she still teaches our medical students there, and she's passionate about medical education, Also joining us is Stephanie Searle, a service manager at the South Australian Institute of Disability Health Service and an occupational therapist by background. so Stephanie brings two things to this conversation: a hands-on allied health view of the person right in front of you, and a bird's eye view of how the whole system can be made to work better for people with disability and for the teams around them. As part of disclosure, I'd like to first start off by saying Dr. Hannah Wu's clinical role is intellectual disability, and as an expert in this field, she teaches in this area. Separate to this, she has an association with eMedici, which is a sponsor of Aussie Med Ed. This episode, however, is entirely separate from that relationship. It's being produced because of intellectual disability health is an important topic for all health practitioners, and nothing is intended as an endorsement. As always, this episode is general education for health professionals and is not a substitute for your own clinical judgment. Steph. Hannah. Thank you very much for joining us on Aussie Med Ed. I'd like to start off by asking Hannah first up, for a medical student or an intern who has only encountered this diagnosis in passing, what do we actually mean by intellectual disability? how do you determine severity, and roughly how common is it?

Dr Hannah Wu: 4:11

Thanks, Gavin. Those are really great questions. I'd like to kind of first start by acknowledging that there are people with lived experience of intellectual disability who may be listening in on their podcast, and want to acknowledge them as well as their families and carers, and also recognize the valuable contributions that that make to Australia and global society. So intellectual disability is not taught extensively in the undergraduate medical curriculum. So we, we use the DSM-V specifically, when we make a diagnosis of intellectual disability. This is often made by a psychologist or a psychiatrist. And really there are kind of three main parts of the diagnosis. The first is that there is a deficit in intellectual functioning, and that might be in a, in a domain such as reasoning and problem-solving, and planning and abstract thinking. The second is that there is a deficit in adaptive functioning, So in terms of adaptive functioning it would be how somebody copes with their everyday skills and how much they meet the standard that is expected of their personal independence of their specific age, of their socioeconomic background, and also of their cultural background as well. And the way we see that can come out in different areas. It may be conceptually, it may be in the social skills, and it may be in practical skills. And these deficits impact on daily function and also occur in multiple settings. And the third, and I feel this is the bit that most people don't really you know, quite understand in their medical education, is that the emergence of the intellectual disability, it needs to be in the developmental period. And so that's any time between birth to kind of somewhere between the age of 18 to 25. So this is distinct from having an acquired bra-brain injury. So if somebody were to be in a motor vehicle accident at the age of 30, and they sustained a brain injury from that, that we wouldn't consider that to be an intellectual disability. But if it was, say, a five-year-old child who was involved in a motor vehicle accident and sustained a brain injury, then we would consider that to be an intellectual disability. So I hope that kind of answers the first question about what we mean by intellectual disability. The second part of your question was about how we determine severity, and I think Steph will have some reflections here as well because this is her area of practice. But we determine severity no longer by somebody's IQ. So this is, you know, how we used to be able to kind of classify somebody, whether it was mild, moderate, severe, or profound. But we actually use somebody's level of adaptive functioning, so essentially how much support they need to determine whether or not they are a mild intellectual disability or if they are moderate, severe, or profound. And so it's a spectrum of needing very minimal support in order to independently function to needing 24-hour care at the profound end of things. In terms of how common it is, about one in 50 people. So one in 50 people who walk into a healthcare setting will have an intellectual disability of some severity.

Dr Gavin Nimon: 7:07

Excellent. With that one in 50 number, I was thinking about it being the fact that obviously they may require more services, but often they're also underserved and may not present as often. So the actual exact number of presentations may vary in various ways, I expect. Stephanie, do you have any thoughts to add to this conversation about how we assess the severity of intellectual disability?

Stephanie Searle: 7:30

Hannah's given us a beautiful summary there, so I haven't got a huge amount to add. I think one of the key things is we see often people getting confused about that difference between a cognitive disability versus an intellectual disability, and that real key difference is that it needs to have been present and occurred during a person's developmental years. That, that can just be a point of definition that becomes quite tricky for people. I think within DSM, we've got some really helpful resources that give an explanation around people that sit in that more mild ID severity are probably people that may be able to live independently in the community and have support for a few hours a day. They might be able to navigate public transport on their own and things like that. Whereas people that are sitting in that more moderate, severe, profound end of the spectrum are increasingly requiring higher levels of support, living in shared accommodation settings where there's twenty-four/seven supports available to them right up to people that might be at a really high ratio of care where the number of staff is greater than that individual person living in the house

Dr Gavin Nimon: 8:36

perhaps you can tell us about the South Australian Institute of Disability Health Service What is it and who do you look after, and where does it sit within the South Australia's broader health and disability system?

Stephanie Searle: 8:46

Yeah, sure. So, we are a specialized statewide outpatient service. We're part of SA Health. So we will see adults with moderate, severe to profound intellectual disabilities from anywhere in South Australia. So we will provide telehealth consults for those in regional areas, and more recently, we've been actively traveling to the regions and doing regional outreach clinics. We're trying to get to all of our regional LHNs once a year at least, where it gives us a chance to actually see our patients in person, but also offers the opportunity to do some capacity building with some of the clinicians locally in that region. We are very fortunate to have a multidisciplinary team at SAYS. So we've got doctors from a variety of specialty backgrounds. Obviously, we've got Hannah from a general practice background. We've also got some doctors from a rehab medicine background, as well as psychiatry and neurology. In addition to that, we've got nursing staff covering off both physical health and mental health. And then we have a beautiful team of allied health staff across occupational therapy, pharmacy, social work, behavior support, and speech pathology. And last but not least, we have our admin staff that keep the clinic running. We have counterparts interstate for some of your listeners that may not be in South Australia. There's the Centre for Developmental Disability Health in Victoria, the Specialist Intellectual Disability Health Service in New South Wales, and the Queensland Centre of Excellence in Intellectual Disability and Autism Health up in Queensland.

Dr Gavin Nimon: 10:28

Well, hopefully there's also services like this around the world as well. are you aware of any services overseas as well that you've come across?

Stephanie Searle: 10:35

Yeah, I think the service models overseas can look quite different depending on the health and disability sector. In some parts of Europe, their care models are still quite institution-based, and so the service equivalents of ours are quite well established within that institution base, which is obviously historically what our care models here used to look like many years ago before we moved away from that. So in terms of the international landscape, it is very dependent on how that is set up in that country

Dr Gavin Nimon: 11:07

Well, a question about language. It's something I'm always pretty anxious about, especially as a podcaster. I mean, how do you go about using the correct terminology? How do you and the people you work with prefer to talk about disability, and what should a junior doctor understand about person first versus identity first language?

Dr Hannah Wu: 11:23

Yeah. I think that's a great question, and it's I think it's great as a practitioner to be sensitive to the preferred language, and I think you will probably come across differences in what people actually prefer. So you know how it used to be that we would say you know, like a schizophrenic person, but now the preferred language is a person with schizophrenia, and it may differ. So instead of a person with diabetes, it might, Sorry, rather, instead of a person a diabetic person the preferred language is a person with with diabetes. So, my, my understanding is that we, we are kind of shifting towards identity-first language. So, an autistic person, being that autism is part of that person's identity, is preferred to a person with autism spectrum disorder. So that's my understanding. But I think it's important to be sensitive to what somebody's personal preference is in terms of how how that is referred to when you're consulting with them

Stephanie Searle: 12:14

I think Hannah's made the key differentiation there by referring to the fact that the autistic population prefer to identify as an autistic person whereas our intellectual disability population prefer to be person first. It can obviously get quite tricky when you have those two diagnoses coexisting together for a person and ultimately, where possible, I think it's important to just ask the person how do they wanna be identified

Dr Gavin Nimon: 12:41

we touched on this in the intro, but let's put some numbers to it. What do we actually know about the health outcomes for people with intellectual disability compared to the general population? I believe it's not quite as good. Can you tell me about that?

Stephanie Searle: 12:53

Yeah. So we certainly know that people with intellectual disability have a higher rates of potentially preventable hospital presentations, as well as a much higher rate of potentially preventable deaths. So that stat is approximately thirty-eight percent, which is twice that of the general population in terms of preventable deaths. And we know that life expectancy for a person with an intellectual disability is only fifty-four years old, so that's twenty-seven years younger than the general population, and it's right up there with one of the worst health outcomes of any particular group here in Australia

Dr Gavin Nimon: 13:28

Wow. That's is, it's really quite disheartening to hear.

Dr Hannah Wu: 13:33

Yeah. Certainly in the general practice context, those who we have identified as experiencing intellectual disability are much more likely to access their GP, but when they do access the GP, it's not really for the longitudinal preventative type of healthcare. It's often because they're in crisis, they are in crisis rather or there is some other acute presentation. So, I think the Royal Commission highlights it well, what you referred to in your introduction, that this is a systems issue, like gross systemic neglect that has led to the worst outcomes that people with intellectual disability experience

Dr Gavin Nimon: 14:11

Yeah. And for a GP who only has a small number of patients with intellectual disability on their books, what's the most important thing for them to understand about this,

Dr Hannah Wu: 14:20

look, my, my reflection on you know, the way general practice is structured is that it's not always conducive to being able to provide optimal care particularly with the time limitations of mainstream general practice. And with those time limitations, it means that sometimes assessments can't be as comprehensive as what, you know, being in a time unlimited consultation setting would be like, which means that GPs are often having to rely on third party or collateral history. And that is a potential source of, of bias because it means that you know, the GP is relying on the history that is provided by that person's carer, and it may actually be a carer that is not the one who is most familiar with that patient. So I think it's quite important for a GP who is seeing somebody who has intellectual disability that they need to consider the differentials really quite broadly. They should be trying to zoom out and really trying to kind of pinpoint you know, why it is that a person has presented to general practice rather than, I think, relying solely on what has been presented to them by a third party

Dr Gavin Nimon: 15:24

And I presume what you've said really is to make sure that he's put aside enough time to actually take an appropriate history and not rush the consultation.

Dr Hannah Wu: 15:32

Yeah, where it's possible. But, you know, many many people with intellectual disability are non-verbal, and they use other ways of communicating. And by, you know, the nature of that, it's not generally possible to, to take a very thorough history in, in 15 minutes. So, I mean, the use of double appointments is one possible method. I think, you know, further collateral history-taking, so looking at the, for example, like the reports that the carers may bring in, whether that's behavior incident reports or stool charts or weight charts or food charts. It's all, it's all information that we need to be able to put together

Dr Gavin Nimon: 16:08

Excellent. Also important, certainly as a surgeon, is the consent capacity and supported decision-making, and that's something that junior doctors often find confusing, and myself as well, particularly when the guardian's not a family member. Perhaps you can tell me about the framework that people should be aware of

Dr Hannah Wu: 16:23

Yeah. I think this is something that junior doctors do find really quite confusing. I perhaps let me first reflect on my practice as a, as a GP. P-people with intellectual disability are often kind of accompanied to their consultations by their support workers or their carers. Something that's not, I think, quite consistently applied is actually obtaining appropriate consent when the person who is accompanying the patient is not actually their consenting person. So I think actually identifying the guardian and identifying the person who is making decisions is quite important. This is really, I suppose, you know, you know, in the context of somebody with, you know, perhaps the more moderate, severe to profound intellectual disability, where they do have somebody else who has been appointed the substitute decision-maker. But there are those who with perhaps more milder forms of intellectual disability where they may actually be self consenting. So I suppose if we go back to first principles capacity is decision specific. So it is specific to the decision that is being presented or the problem that is being presented. So, just because, you know, somebody has, for example, they have an appointed substitute decision-maker, doesn't mean that for that particular decision that substitute decision-maker is always the one who, you know, whose opinion is the one that you take, in other words. So I think, you know, lesson number one is that junior doctors need to identify who the consenting person is, like who the actual guardian is. And then second is, you know, are we following their their recommendation for the specific decision that needs to be made today or not? I think those are some kind of initial principles. And the other thing I w- I suppose I would mention is that in the absence of a family member or a suitable person who's been appointed as substitute decision-makers, sometimes in South Australia at least, the Office of the Public Advocate is the appointed guardian, and that might be OPA as a whole. So that may be a duty guardian that a doctor would need to refer to for decision-making. Or it may be that there is a delegate guardian, so somebody within OPA who's been specifically appointed to be the decision maker for this person. And there would be OPA equivalents in the other states and territories of Australia as well

Dr Gavin Nimon: 18:30

So Steph the team around a, a person with intellectual disability, it's not just the person themselves, but there's also support workers, there's family members, there's other health, allied health professionals involved. Perhaps you can outline who actually is involved.

Stephanie Searle: 18:43

Yeah, I think that family group is the key point of difference for a lot of people. Some people with intellectual disability are still living with their family and, and live within their family home, and other people with intellectual disability may longer, may no longer be living with their family and living in a supported accommodation environment. And at the p- the people around them might look slightly different depending on what the living environment looks like for that person. So, generally, those that are still living at home, we see that their parents are very actively involved in their care their parents are generally attending the appointment with them. And then in terms of the kind of support network from the NDIS side of things that's around the person s- most people will have a support coordinator who, if you think of them as like the case manager or the person that pulls everything together, they're a really helpful resource and a, a good first point of contact for a doctor to go to if they're not actually sure what is and isn't around the person. If you start with the support coordinator, they're a really useful resource. And then generally, people may have support workers or paid carers who are involved in their day-to-day care, and that could be anything from personal care, meal preparation to things in the community, being able to attend social activities, and things like that. And then people will generally also have a therapy team around them. So depending on their individualized support needs, they may have an OT that's funded through the NDIS. There may be a speech pathologist. There may be a behavior support practitioner. There might be a physio or an exercise physiologist. Some people will attend certain programs during the day. So they might attend a supported employment program, and there would be a team of people that assist them day to day when they're at work in that setting. Others may attend a day options program, and again, they would have a team of carers that it's generally a shared ratio of care. But for some people, it is one-to-one in those settings where they're supported to participate in activities during their day

Dr Gavin Nimon: 20:52

Hannah, what are your thoughts particularly on from the medical side of things? is there other people that might be involved from your experience as well?

Dr Hannah Wu: 20:59

Yeah. I would say that there are some differences in the pediatric and the adult space in terms of who from the medical side is involved. I think in the pediatric space, the general pediatrician is normally the kind of primary care coordinator. And that pediatrician may be supported by other pediatric subspecialists as needed, whether it's pediatric genetics, respiratory and other specialties. But then when the person with intellectual disability moves into adult services, that's when it does become a little bit, kind of less clear who it is that's actually kind of coordinating this person's primary care. Ideally, it would be the person's community general practitioner. But we are, really acutely aware that there are, you know, people with intellectual disability who can't access mainstream services like their general practitioner, which is often why I think we see, further fragmentation of care as that you know, young person moves into adult services. In theory, an adult neurologist may still be involved, an adult psychiatrist may still be involved. An adult general physician may also be involved as well, and there are certain clinics, at least in, in South Australia who do care for the young adults with, you know, particularly complex conditions. The other thing that I will add is, you know, before I started working in intellectual disability health I wasn't really aware of, you know, the role of the support coordinator, and I also wasn't really as aware of the role of the positive behavior support practitioner as well. So those these are people who I, I kind of came to understand what their roles are, and I think it-- that's quite important for junior doctors and GP's to understand. Particularly as we you know, interact with people with intellectual disability in the healthcare system, whether it's, you know, the fifteen-minute general practice consult or in the emergency department. I think communication of the outcomes of the health consultations through to the rest of the team is something that is often missed. And if that information doesn't go through to the right people, it means that plans often aren't implemented. And so I have found that the support coordinator is somebody that, you know, I can rely on. If I can get their email address or their phone number I can call them, convey the plan, and they will ensure that the rest of the team, whoever needs to know, does know. And then the positive behavior support practitioner, I have found them to be vitally important as well you know, to lean on them, particularly for those who are presenting with changes in their behavior. So just ensuring that those strategies are actually being implemented appropriately in the person's home environment

Stephanie Searle: 23:50

Yeah, I think the main thing I would add to that is that I'm conscious we've presented a very idealistic picture of what the support around a person can look like, and it may not necessarily look like that for everybody. And that this is in an ideal world they would have all of these members around them

Dr Gavin Nimon: 24:08

and Steph, what things about the NDIS health interface that you believe is really important that doctors should understand better?

Stephanie Searle: 24:15

Yeah, I think the NDIS can be a really complicated system for most people to navigate, including us as healthcare workers, and there, there's almost two very distinct categories. The NDIS is a system that is set up to be supporting people's permanent lifelong disability. The system isn't about treatment or trying to change a person's disability, but supporting the care needs that exist around that. And obviously, our health system is very much set up with the intent that we are treating people's health and trying to address any short-term medical conditions that may come up and be reversible as opposed to that NDIS space that's permanent lifelong. I think as, as doctors, people can often be presented with various forms and paperwork that goes with, with the NDIS. And if in particular it's something around confirmation of a person's disability or an access request form, for example, which might be used to support a person gaining access to the NDIS as a first port of call, it's really important that we don't use medicalized language in any of those reports that are going to the NDIS. So an example we gave recently to some med students was we can't write hemiplegia on a letter that's going to, to the NDIS. We need to actually explain it in very basic language. We need to talk about a muscle weakness that is affecting the arm and leg on one side, which impacts that person's ability to complete XYZ things. So we, we talk to each other, we talk within our health space in very medicalized language, but we need to really simplify it back down if it's anything related to the NDIS. I think the other thing that's probably important for people to know is the things that will or won't be possible within an NDIS, and certainly there are certain health provision things such as administration of a diabetic medication that's injected or wound care and things like that, where we can assume that can be covered through the person's NDIS supports when in actual fact that generally sits within the health space, and we need to navigate ways of making sure that those care needs are still met

Dr Gavin Nimon: 26:35

Brilliant. Well, let's walk us through what a really good consultation looks like from the moment the appointment's booked right through to the person walking back out the door. Hannah, what would you hope would be appropriate consultation at your GP practice?

Dr Hannah Wu: 26:50

that's a great question, Gavin. I, I think, you know, a good consultation can be a little bit hard to describe because there is such a big variety of, you know, reasons why somebody may present. The experience I think of, you know, people with intellectual disability when they, come to mainstream services is that it often isn't, kind of very flexible. I do think that there are some things that we can do that may be you know, being flexible with the type of appointment format, whether that's telehealth whether it's, consulting from the car park whether it's, you know, consulting from a room with the lights turned down or whether it's consulting without the person having been waiting in the waiting room for fifteen minutes beforehand. So having them wait in their car and then calling them in when the doctor is ready to see them. I think those are kind of simple administrative and environmental changes that we, we can make. Something I do think that is helpful for the GPs who do have you know, patients with intellectual disability on their books is having kind of regular appointments pre-booked ahead of time, even if it's not really clear that they're needed. So I think if there is a regular recurring appointment you know, perhaps every three months, then you know, the person's care team knows that they have an upcoming GP appointment so that if any concerns do arise, they're not scrambling to try to find an appointment. I also think a good consultation relies on, the person's care team being really prepared as well, and that might look like the GP reception staff kind of calling ahead and just reminding the person's care team to please make sure they bring in their charts. So the medication charts, their bowel charts, their weight charts, behavior charts. I also think to close the loop, a good consultation ends with communication back to the care team and the, and the wider team as well, and I think a really practical and easy strategy is simply printing off the GP note that is written and then handing that over to the carer and saying, "Could you please pass this on and ensure s- that the plan is implemented?" So those are my initial thoughts.

Dr Gavin Nimon: 28:45

So Steph, what are the practical communication strategies that you think a junior doctor could actually put into use in their very next consultation? As an allied health professional, you might have some thoughts on what might may make it easier

Stephanie Searle: 28:57

Yeah, I think one of the key things that can make healthcare access really challenging is that a lot of our system relies on literacy levels, and it relies on the patient having a high literacy level. So we talk in very complex language when we're verbally communicating in an appointment setting. But a lot of the paperwork and the resources that we provide to people is very text-heavy and really relies on people being able to read and write at a fairly proficient level. And that's one of the big accessibility problems that people encounter in our healthcare system. Unfortunately, there's no one size fits all piece of advice that we can offer that's gonna make this magically easier for people. We need a very individualized approach that meets the needs of each individual person. There are some, some general principles like what Hannah's mentioned and other things that are available out there that are an overarching kind of set of principles that are a good starting point. I think the other thing to be wary of is how can we make some adjustments within the rigidity of our health system? We've discussed how, how time challenging general practice consults can be and, and often that flexibility's not there. But equally, we certainly see for people trying to access an outpatient consult or things like that, a lot of our public health system relies on people being able to attend the appointment and tolerate sitting in a waiting room, waiting to come in and see the doctor. Often, the rooms that we see people are in are incredibly small, confined spaces and that can be really overwhelming for people. So where we do have opportunities to think flexibly that might actually enable access, it's really important for us to do that.

Dr Hannah Wu: 30:40

there is just one other thing I will add about communication, and I think it's healthcare workers should be mindful of, like, how we ask questions in front of the person with intellectual disability because sometimes it can be quite triggering and sometimes it can be quite deficit kind of based as well. So, you know, being mindful of that, if, you know, a GP does need to kind of elicit a history of whether or not there has been any changed behavior, rather than saying, "Has this person been more verbally or physically aggressive?" You could frame that differently. So you could ask the support worker, you know, "Has there been a change in how X has been experiencing anxiety or stress or worry?" And then that you know, provides an opportunity for for the person to answer if it wasn't possible for for the healthcare worker to speak with that carer separately and individually

Dr Gavin Nimon: 31:27

and how do you keep the person themselves at the center of attention when the room is also full of family, support workers, and sometimes a behavioral support practitioner?

Dr Hannah Wu: 31:35

I think that's a real challenge. I think it's important that we start with the individual first. So I think you know, I made reference to this before. So to, to start your communication with that person, whether it's simply making eye contact, if that's what they're comfortable with. It could be bringing something to their kind of like your, your joint attention. It could be, something in the environment that, you know, you might try to bond over first. I think kind of building up the initial rapport is quite important. I think, you know, in the ideal world, the healthcare professional has some kind of pre-knowledge of, you know, what the person's preferred communication style is and how much they are able to actually verbally communicate for themselves. And I think with that information, you, you would adjust the consultation then. Often you know, support workers and behavior support practitioners are skilled and they are experienced, so they have been to many of these healthcare consultations before, and generally they will know you know, what information the doctor or the healthcare professional, healthcare professional needs. So, yeah. it's been, I think, probably less common that there has been, lots of conflicting opinions. I think that would be the less common consultation

Stephanie Searle: 33:13

Yeah, no two people are gonna be exactly the same. But I think one of the key things that we can do is even if it's not necessarily the person with intellectual disability that's gonna do the most talking, can-- how can we position them within the room? Where can we have them so that they are still connected and involved? And as opposed to the parent or carer occupying the seat closest to the doctor can that be where the patient is able to sit and maintain that, that direct involvement? It provides opportunities for a little bit of eye contact if the patient can tolerate that, for example, and an opportunity to just indirectly be checking in with them throughout the consult based on that physical proximity. Now, obviously, that's not gonna be appropriate for everybody. We know that some people have had historically traumatic experiences of doctors and healthcare, and they may not be comfortable sitting that close

Dr Gavin Nimon: 34:10

so obviously a very common scenario is when a support worker brings in a person because their behavior has changed. What should a doctor think about when that happens,

Dr Hannah Wu: 34:17

Yeah. This is a really common presentation in, you know, many healthcare settings, whether it's, yep, ED or general practice. I think having a framework helps health practitioners to be really, I think, broad and really to try to overcome some of the diagnostic overshadowing that can occur with with how, you know, people with intellectual disability present to the healthcare system. So one particular framework that w- that I often use is the HELP framework. So that's H for, like, health. So is the change in behavior a manifestation of an underlying health problem? And that might be pain, and pain can be due to lots of different things. It might be reflux, it might be an occult fracture, it might be a pressure injury, it might be ingrown toenail. It could be, it could be anything. E is environment and support. So has something changed? Has there been a change in the living situation? Has there been a change in the housemate? Has there been a kind of new support worker who has started? L is lived experience, and this refers to the lived experience of the individual. And that's, I think, a prompt for us to consider, you know, has this person, for example, experienced prior trauma? Do we therefore need to take a more trauma-informed approach to our assessment and our workup? And could their presentation be influenced by their own lived experience of trauma? And then P is psychiatric. So, what we do find is that, you know, there is often a delay in accessing healthcare because of kind of the comorbid presentation of a psychiatric illness in a person with intellectual disability. And that's, you know, kind of further compounded by kind of challenges in communication that make it difficult for health professionals in order to take a kind of full and comprehensive history. And then also further compounded by, the person's individual experience is sometimes traumatic in their past with he- the healthcare system. That also prevents us from being able to do a kind of comprehensive physical examination. So there are lots of things that can cause a change in behavior. I think the main message I, I would really wanna make is that it shouldn't automatically and always be attributed to the person's disability. It… we should still be taking a kind of comprehensive approach to really work out, work out this and, you know, there are many examples we can give of, you know, change in behavior that was treated with antipsychotic medication that actually ended up being, for example, a dental infection or H. pylori gastritis or, or menopause or polypharmacy. Just lots of examples of those. So, yeah, I would use the HELP framework. That's the message I would primarily make

Dr Gavin Nimon: 36:47

Any tips to investigating these patients then

Dr Hannah Wu: 36:50

Yeah. Yep. Look if you, if we kind of take the higher level approach to this, I, I would say that, guidelines don't generally apply. So that's not to say that we should be doing things out of guidelines, but our typical way of utilizing guidelines in medicine is that we take a very linear and very stepwise approach. So we do this test because this test has the greater sensitivity and specificity. But what we need to consider is for the person with intellectual disability, a blood test is not easily feasible. So if we were investigating somebody for suspected H. pylori, we may actually choose to do a H. pylori fecal antigen rather than doing a blood test. The other comment I will make about investigating is that if we are going to investigate, I think we should be making the most of the opportunity because if we're going to go to the lengths of, for example, providing oral sedation and, you know, topical local anesthetic or using a VR headset in order to support being able to do basic investigations, we should make the most of that, of that opportunity and think really carefully about what it is that we're actually ordering. So it… What I mean is we can investigate for the acute presentation, but we should also think about what other tests this person needs. And, you know, many people with intellectual disability are on, you know, psychotropic medication that would require medical monitoring. So in that, in that one opportunity you have to do a blood test, you should be doing all of the kind of metabolic indices as well, the prolactin, the thyroid function et cetera. So that's for blood taking, and then obviously there's, you know, radiology as well. And, for something as simple as an X-ray, sometimes that is achievable with you know, behavior support strategies, with social stories, which I'm sure Steph can tell us about with adequate planning as well. But sometimes there are investigations that aren't as easily feasible without, you know, a general anesthetic. So, there are certainly pathways for that in the different states. And then I think the last thing I w- wanna say about investigations is that sometimes the opportunity can present itself when you least expect it. So I'm referring to the emergency presentations. An example is somebody experiences a seizure, and they are postictal. So while they are postictal might be your opportunity actually to do the blood test and everything else that is due on that blood test at that time. So yeah, those are my thoughts about an approach to investigations

Dr Gavin Nimon: 39:10

so Hannah, you mentioned in that passing about the VR headsets. Are there any other tech gadgets that might be useful in help distracting the patient or what other developments have there been over the years

Dr Hannah Wu: 39:20

think Steph is actually really well-placed to answer this one as an OT

Stephanie Searle: 39:25

Yeah thanks, Hannah. Certainly we've recently been trialing the VR headsets at SAID. In s-particular, we've been using a model called Smiley Scope, which is available at a few of the SA pathology lab locations here in South Australia as well. And that particular device has quite a choreographed scene that people are watching and the nurses are able to kind of time putting a needle in with when some of the fish under the water might be nibbling at a person's skin. And obviously, again, everything we're saying is individualized to each person, but sometimes tech can be helpful for people if that's something that has meaning to them. Again, their previous lived experiences are gonna be one of the key factors. And I think the other thing when we're talking about investigations is that our, our system and our ways of working rely on the doctor ordering the test and the person being able to go and have that test or scan completed within a relatively short period of time. And for some people, it may not be that they can't achieve that, but they actually need a bit of time for preparation and practice and, and building up to what's involved to actually have it done. Some people may do a few like practice trips to and from the location that they're gonna have their blood test or that they're gonna have their scan and just have a look at the room without the pressure of knowing that it had to be done on that day at that time. Hannah mentioned social stories before. For those who aren't familiar with social stories, it-it's a photo-based story where it explains and steps through for a person, you know, this is the steps that are involved with having a blood test done. The nurse is gonna put a tourniquet around my arm, and it might squeeze and feel a bit tight. Th-- And there's photos so that if the person doesn't have the literacy level to read it themselves, it may be that they can be going through that with their carer or their family member to, to build up to having that done. I think another thing that I would touch on is that it's not uncommon for people to, particularly those with an autism diagnosis, to refer to themselves in the third person, and that can make some of those investigations and questions quite tricky. But it may be that they are able to communicate via an external object, like a toy or a doll. Instead of understanding when the doctor asks if they've got a headache, it might be, "Does Jemima have a headache today?" And that may be a point of dealing with a communication barrier for a person. And as much as possible, even within the consult itself having a visual chart, it may be as simple as having a printout of the body that a person could point to where it hurts on a chart as opposed to attempting to kind of localize it to their own internal being

Dr Gavin Nimon: 42:11

Brilliant. Obviously we talked about behavioral change. How do you assess cognitive and functional decline in a person with intellectual disability?

Dr Hannah Wu: 42:18

Yeah. That's a, that's a great question. So I think, you know, for the person without intellectual disability who is presenting with a cognitive change we tend to kind of fall back on our usual cognitive tools like your Mini-Mental State or your MoCaS or your FABs. I think the main message we'd wanna convey is that you need to use a tool that is specific for people who have intellectual disability. So the D-SQUID is one example. And that is the-- Dementia Screening Questionnaire for Individuals with Intellectual Disability. So administering the D-SQUID relies on the kind of carer report. So trusted carer report of whether or not the particular domain we are asking about has changed from that person's baseline. We often do lots of serial D-SQUIDs over time to see if there has been a change as well. The rest of the workup would be as for anybody without intellectual disability. So it's important that we do the basics. So you do a urine to make sure it's not a UTI that has caused a cognitive change. Blood tests, if it is feasible, exclude the vitamin deficiencies, exclude the thyroid dysfunction, and neuroimaging if it is indicated, whether that's with a CT or, or an MRI. But I appreciate that there are, the practical and feasibility challenges of being able to do a full and comprehensive workup

Stephanie Searle: 43:35

Yeah, I think change in function is one of our key observation points that we can use and that we probably lean into more than anything else. A lot of our mainstream cognitive assessments and screening tools, again, are very language-heavy and, and very dependent on a person's literacy level. So that D-SDQ assessment that Anna's referring to, i-it's running through a series of questions where it's something like, you know, needs assistance with showering and the potential answers to that are always been the case, always but worse, new symptom, doesn't apply. So I think we can historically get very bogged down in our standardized assessment tools and if we keep it a little bit more basic, we can actually still gather quite a robust amount of information that's really helpful in terms of actually identifying when something has changed for a person purely based on their function I might add in another support or resource for people. A lot of the way that we try and describe symptoms or rely on the patient describing the symptoms really is related to their ability to understand their internal state of being. And for people with autism, that can be really quite difficult and challenging. And the language that they use or the things that make sense to them may be quite different to how we would describe it. So there's a, a resource called All the Feels, which is both an app and a set of flashcards which is another way of, instead of us asking people if their pain is sharp or burning or that sort of thing, it's actually got some visual representations of a flame or, you know, a bubbling cauldron that, that might be a different way of describing a, an unsettled stomach, for example. So I, I think there's some resources out there. The biggest challenge is knowing about them

Dr Gavin Nimon: 45:25

Okay, Hannah, I believe this group of patients with intellectual disability are often prescribed psychotropic medication. Can you tell me a little bit about that for me, please?

Dr Hannah Wu: 45:33

Yeah, absolutely. I think this is really common. So psychotropic medications are medications that affect the way the brain functions. So it includes antidepressants, it includes benzodiazepines, it includes antipsychotic medication. And for the patients we see, often these are medications that have been prescribed kind of many, many, many years ago and have been continued on. And often by the time a health practitioner sees them, it's not kind of immediately clear what the indication for the medication is, and often in documentation it may be something as broad as behavior management. Sometimes the indication for the medication may be an underlying psychiatric diagnosis. So it may be, for example, chronic schizophrenia, it may be generalized anxiety disorder. I think there are some really important learning points here for junior doctors about, you know, the, the prescription of psychotropic medication. Like all things in medicine, I think we, we should think about prescription medications really quite carefully by weighing up the risks and the benefits. I think in this particular patient cohort, we should be really clear as practitioners what the indication for the medications is. And we'll talk a little bit more to this later as to, the particular importance of kind of clear documentation for the indication and what that actually means in terms of following up and, and meeting legislative requirement I also think it's important that you know, if a prescription of a psychotropic medication is made, that there re- there needs to be a really clear plan as to, is this intended for long-term use or is this intended for short-term use? What is it for? And if it is short term, what is the anticipated duration and how would you actually wean the person off of this medication? So I do think that kind of forethought and forethinking needs to happen at time of prescribing the medication because it's never just a prescription. So psychotropic medications so antipsychotics in particular, are associated with many potential side effects metabolic, extrapyramidal side effects, anticholinergic effects, and this affects the medical monitoring that needs to occur by the practitioner who's prescribing the medication as well. So what I mean by that is with the potential for weight gain, it's important that, you know, weight, blood pressure, fasting blood glucose levels, cholesterol is monitored at a regular interval. In the ideal world, this is six monthly. Other parameters that need monitoring are things like the prolactin, the ECG for the QTC interval, liver function testing and assessing for the neurological side effects, and this needs to happen in the ideal world annually as well. So it's not just the prescription it's the kind of counseling that needs to come with it the plan to come off of it, and what monitoring you need to do while the person is on it as well. So, I suppose, you know, on the topic of the metabolic side effects and, and monitoring for this, something that I think practitioners should also be cognizant of is particularly the potential for weight gain and whether or not the co-commencement and the co-administration of medications such as metformin is appropriate for that individual. And that's a very individual decision, and that needs to be weighed up you know, the risks and benefits of doing that, doing so as well So, I think that kind of leads into the, the next thing that I, that I think is really quite important to talk about, which is why is it that we need to be really clear on the indication for the medications? So, being clear on the indication for the medication enables us to provide care effectively, because if something is aimed at influencing a person's behavior, that is considered a chemical restraint. Okay? Whereas if it is prescribed for the purposes of having a therapeutic effect on an underlying condition, so for example, an anti-psychotic medication for chronic schizophrenia, that's considered for therapeutic purposes, for medical purposes, and therefore not a chemical restraint. This is particularly important for those who have a support team that is that falls under NDIS because they have the requirements to report any single time a medication is used for chemical restraint. And so this is why, as the health practitioner who is prescribing the medication, whether it's for the first time or on an ongoing basis and monitoring it, we need to be clear what this is for, chemical restraint or for treatment. Steph, I don't know if you have any thoughts or anything else you wanted to add to that?

Stephanie Searle: 49:48

Yeah, thanks, Hannah. Very conscious that I'm, I'm a non-doctor in the room, but I think the one thing that is very clear is that there isn't a specific medication for the treatment of autism or for the treatment of intellectual disability, and that's our key point of difference with some of that NDIS reporting requirements. So if a person is having their medication administered to them by a paid support worker, there are legislative requirements here in South Australia and in other states. Here in South Australia, the exact schemes can look a little bit different, but for us here, it's the restrictive practices unit. And I think the, the key thing to know is that even if the doctor has prescribed the medication, it doesn't necessarily guarantee that the support worker is going to be able to administer it or administer it without needing to do other administrative steps in the background, such as incident reports until the time at which that medication has been written into a person's behavior support plan. And once that behavior support plan has been approved by the restrictive practices unit, that incident reporting per dosage requirement will change and will reduce. But we certainly see that, particularly in the context of people having presented to an emergency department, for example, and an additional medicine being added because the person's presented in behavioral crisis, for example, that accommodation setting may not be able to readily administer that additional medication until it's been through the appropriate authorizations. And as much as that can feel like it's an-another layer or an administrative burden, I think it's really important because it's actually-- it's putting the health of these people front and center, and it's really making us reflect on, does this medication actually need to be there, and is it in the person's best interests for them to still be on it?

Dr Hannah Wu: 52:23

that's absolutely spot on, Steph. The other thing that I would add is if a health practitioner has worked out that, you know, now is the best time to wean a medication that has been that has been prescribed, and I would refer, you know, our listeners to the Maudsley Deprescribing Guidelines as a reference, that there are a couple of things to be aware of. So firstly, the process of weaning can be very slow. Um, the second thing is that we should be aware that w-the withdrawal from the medication can appear to be worsening behavior, but that is actually withdrawal itself. And so what we commonly see is a very reactive, you know, start the wean, behavior worsens based on carer report, and then medications are bumped straight back up again. But that, that could actually be medication withdrawal. And then the third is a medication side effect. So, akathisia being an extrapyramidal side effect can also be a mimicker and a, and a confounder that might appear to be worsening behavior, therefore prompting a practitioner to again increase the dose of a psychotropic medication, when actually it's a side effect and the medication needs to be decreased. So, practitioners do just need to be aware of those potential confounders as well

Dr Gavin Nimon: 53:34

Well, that leads us into difficulty or dilemmas with diagnostics, and I believe there's a term of diagnostic overshadowing, Can you explain to me what it is and give me perhaps an example of it

Dr Hannah Wu: 53:44

Yeah. The most common example of diagnostic overshadowing is a presentation of behavior that is attributed to the person's intellectual disability rather than being a separate issue that has its own separate treatment pathways. So for example, a person with intellectual disability who's presenting with self-harm, they their self-harming presentation is considered part of their intellectual disability rather than their self-harming behavior as being a manifestation of anxiety that can be treated with an anxiolytic medication. So that would be one example of diagnostic overshadowing

Dr Gavin Nimon: 54:17

Right. What cognitive biases are there when you're assessing these patients, and how can we actually try and prevent that?

Dr Hannah Wu: 54:23

Yeah. Well, there's a great article by the College of Physicians that actually covers all the different types of cognitive biases in healthcare. Look, ultimately, cognitive biases potentially lead to medical error, and there are biases such as anchoring biases, where the practitioner might kind of anchor onto one element of the presentation and then disregard kind of any additional information that is presented. It might be an availability bias or a recency bias is an example. So where the most recent information like that-- the most weight is placed on that as opposed to the entire picture. Premature closure, where, you arrive at a diagnosis much earlier before considering the whole picture. And then there's confirmation bias, f-framing effect. There's lots of different types of biases. I think, you know, practically speaking, I think, you know, practitioners need to kind of utilize their reflective practice skills, slow down, zoom out, and consider things like, does this presentation need a second opinion? Can they use a checklist to ensure that they have actually checked off all of the components, even though it may be very basic? Like, have they considered that you know, this particular presentation of what might be kind of seemingly angina could actually be an aortic dissection. It could be something very checklist-based like, like that. All of this to say that I think, you know, as a practitioner, if we are reflective in our practice and constantly really try to kind of consider what in our practice did we do well, what could we improve on? If something went wrong, why is it that it went wrong, and what can we do better next time? I think the-these are all things that can help us try to overcome these cognitive biases, and they affect everyone

Dr Gavin Nimon: 56:03

And Steph, what tips have you seen work really well with your patients?

Stephanie Searle: 56:07

I think the most simple one is if this person didn't have an intellectual disability, what would we be looking for? So just because we're not able to necessarily communicate readily, or we're not able to examine the patient in the same way that we would somebody without an intellectual disability or somebody without that sort of trauma experience, potentially, if you come back to what would you be doing in the absence of that disability, I think that's the simplest piece of advice I could offer

Dr Gavin Nimon: 56:37

Well, as part of the whole assessment and keeping patients forefront and the best of appropriate treatment, I believe there's a comprehensive care and annual health assessment, the CHAP assessments tool, which is available in Australia. Perhaps you can tell me a bit about it. Is that something that's used regularly amongst your patients

Dr Hannah Wu: 56:54

So the health assessment tools are used really commonly in, in general practice. So there is a specific MBS number that's tied to it, so the seven oh seven. And specifically, it's recommended that you complete a CHAP that will kind of ensure that all of the relevant domains for the health assessment are covered. So there is an adolescent as well as an adult version of the CHAP. It's essentially a twenty-two page document. It's not twenty-two pages that, you know, has to be completed all in the one health assessment, but most of it is well, it's about eighteen pages of it. It's actually first done by the carer or, or the guardian So it goes through in a pretty systematic way. Does this person have any of the following symptoms? Yes. No. Yes. No. Have they engaged in, you know, any past preventative health screening, and are they actually eligible for it? What are their health concerns? And then they, then they present to their GP for the health assessment, and then they complete an action plan to actually identify what actions needs to happen now as a result of that. Something that's quite helpful as part of the CHAP is in the appendix, there is a syndrome-specific disorders list for GP's. So it's got things like for the person with Down syndrome what other things relevant to the cardiovascular, endocrine, and musculoskeletal systems that the GP needs to be aware of in the longitudinal care of of the person. So, the CHAP, I would highly recommend that if you're a GP and you're not yet familiar with that, to try to in-incorporate that as part of your intellectual disability annual health assessments that you can do for your patients with intellectual disability

Dr Gavin Nimon: 58:26

Right. And is it something you regularly refer to as well, Steph, or is it something more designed for the general practitioner?

Stephanie Searle: 58:32

And the assessment tool itself certainly sits in the general practice space. But I think what I would add to Hannah's comments is that one of our biggest challenges can be having longitudinal data on people with intellectual disabilities health and that can be for a variety of factors, but in some cases, those who are no longer in the care of their family and managed by paid support workers those staff can rotate through at a reasonably high frequency in some cases. And it's not uncommon for the person that attends the appointment with the patient to have only known them for a few weeks or a few months in some cases, possibly even a few hours. But having one of those CHAP assessments done at least once a year if there's a record of that somewhere, then that's one piece of the jigsaw puzzle to trying to have that longitudinal picture of what's been happening for the person with their health. And it gives the doctors and the healthcare professionals something to refer back to. If something is now reported as being a problem, we can work out, well, was it actually a problem twelve months ago, or is it a new issue that's recently cropped up?

Dr Gavin Nimon: 59:41

So Hannah what about are there other MBS provisions you can advise for general practitioners to draw upon that might help with the person who's, has intellectual disability?

Dr Hannah Wu: 59:53

Mm-hmm. Yeah. Good, great question. So, so in addition to the seven oh seven annual health assessment number, there are other MBS provisions. So, one is the Domiciliary Home Medicines Review which I think is particularly helpful for those who are on many different medications and medications that you may be considering de-prescribing. I think the input of a pharmacist here is invaluable. Another number that I think is a b- little bit underutilized is the case conferencing number. And so a case conference c- needs to be held between three attendees. So that might be a GP, it may be the paid carer, and it may be, for example, another allied health professional, such as the positive behavior support practitioner or the OT. So I think those are things that can be utilized, and this is in addition to, you know, the standard GP chronic care management plans as well for those with chronic conditions. I suppose, you know, on the topic of preventative healthcare, I think important to stress that eligibility for screening programs is the same and that we should still be really actively trying to work out if the person with intellectual disability has had their required screening, whether it's cervical screening, the mammograms, bowel cancer screening, or lung cancer screening. And I think the other aspect that often we don't have time for in general practice because, you know, the person has presented with another acute problem, is ensuring that the right vaccinations are given as well. So the hepatitis A vaccine, for example, is recommended for those with developmental disability, meningococcal vaccines for those who are living in shared accommodation, which many people with disability are. And then of course the usual ones like your COVID and flu. So all of this can be picked up, so the screening, the immunizations, the need for medication review, all of this can be picked up as part of the comprehensive health assessment. So the CHAP tool enables you kind of find the areas that might have been missed over time

Dr Gavin Nimon: 1:01:39

well, let's try and tie this all up. Let's say if a junior doctor has a patient with intellectual disability, what advice would you give to them? What's the single most useful thing you would want them to know or remember from this conversation? We'll start with yourself, Steph. What do you think is really important for them to take home from this podcast?

Stephanie Searle: 1:01:55

I would say ask yourself the question, what if this was my family member? What if this was my brother, sister somebody that was related to me? What standard of care would I want them to be receiving? And I think if we can personalize it, that's one of the biggest ways of trying to actually keep the person front of mind and see them first, as opposed to seeing their disability first

Dr Gavin Nimon: 1:02:21

Very important. It's something that should always be considered for every patient, but particularly in this scenario. Hannah

Dr Hannah Wu: 1:02:28

The main piece of advice, and I've said this a couple of times throughout the podcast is really to try to overcome the issue of diagnostic overshadowing. So for the most common presentations to primary healthcare being a change in behavior should not automatically be attributed to the person's disability. Health practitioners need to do a systematic and, where feasible, a comprehensive assessment. So all causes need to be considered equally, because behavior is often a representation of an unmet physical or psychiatric health need

Dr Gavin Nimon: 1:03:00

Brilliant. Thank you, Steph and Hannah. I'd like to thank you both very much for coming on Aussie Med Ed today. It's great to hear about the treatment of patients with intellectual disability and the processes and important aspects we need to take into account. Once again, thank you very much for your time. and for being on Aussie Med Ed

Stephanie Searle: 1:03:15

Thanks, Gavin

Dr Hannah Wu: 1:03:16

Gavin. Thanks, Gavin

Dr Gavin Nimon: 1:03:17

Thanks again for listening to the podcast and please subscribe to the podcast for the next episode. Until then, please stay safe.