This was the third session of the Advocacy Sector Conversations forum held on Zoom webinar for the first time, on 30 July 2020 (due to COVID-19 event restrictions not allowing large gatherings).
People with complex communication needs are often denied the right to make decisions about things in their lives that affect them. Just because a preference is expressed non-verbally doesn’t mean that communication isn’t happening. There are many ways to communicate other than speech and many ways we can support those who do not use speech to communicate.
Dr Sheridan Forster and Dr Meredith Prain are both speech pathologists and researchers with many years experience working with people with complex and profound disabilities, including deafblindness. Both are accredited Video Interaction Guidance practitioners through the Association of Video Interaction Guidance UK , and both have used this approach to foster improved interactions and relationships between people with complex disabilities and the family members and staff who support them.
Resources from this session can be found at the bottom of this post.
Transcript & Audio
MELISSA HALE, DARU COORDINATOR:
Good morning, everyone. Welcome to the third session of our new look advocacy sector conversation for July 2020. My name is Melissa Hale and I’m the Coordinator of the Disability Advocacy Resource Unit.
Before I begin I would like to acknowledge the traditional owners of the land on which we meet and pay my respects to their Elders past, present and emerging.
We are now living in a new world with a new normal due to COVID-19. Like all of you, DARU has had to review the program. We know that the disability advocacy sector is supporting people with disabilities themselves and the community and the government sector value the advocacy sector conversation so we are pleased to bring this to you safely and online.
We encourage your active participation today. Please type your questions in the Q & A box and at the end of this session I will be facilitating a Q & A session with the presenters.
The captioning link can be found in the chat box.
I hope you have all once again settled in comfortably, ready with your blankets and slippers and warm cups of tea for the last presentation of the July 2020 series.
I would like to introduce our final presentation on ‘Improving interactions and communication with people with little or no speech’. People with complex communication needs are often denied the right to make decisions about things in their lives that affect them. Just because a preference is expressed non-verbally, it doesn’t mean the communication isn’t happening. There are many ways to communicate other than speech and many ways we can support those who do not use speech to communicate.
Dr Sheridan Forster and Dr Meredith Prain are both speech pathologists and researchers with many years of experience working with people with profound disability including deafblindness. Both are practitioners through the Association of Video Interaction Guidance UK and both have used this approach to foster and improve interactions and relationships with people with disabilities and their family members and staff who support them.
Please welcome them.
Thank you, Melissa, for that introduction. We have got a lot to cover, so I will get straight into it.
So just what we’re going to be covering today, I will start by acknowledging the traditional owners on the land on which we’re meeting virtually today and pay respect to their Elders past, present and emerging.
So we will start by introducing ourselves. Then because the whole session is on communication, we will have a look at what is communication and also just a snapshot of Australians with communication disabilities. We will look at some of the causes of communication disability and we will be covering many modes of communication, the importance of relationships in communication. And we will also be looking at strategies for working with people who communicate symbolically and also strategies for working with people who communicate in non-symbolic ways, and we will finish up looking at working with speech pathologists and have some time for questions at the end.
So just in introducing ourselves, I hand over to you, Sheri, to introduce yourself.
My name is Sheridan Forster. I have a speech impediment but it will resolve as the session progresses. You may notice that I have a variety of tics as well, which again will resolve, so they will become somewhat less distracting, I hope. I also have a top lip that is double its normal size at the moment because I have an allergy, so just give me patience and love with my speech at the moment.
I am a speech pathologist. I have been working and interested in people with profound intellectual and multiple disability for the past 20 years.
I hand back to Meredith.
Even with a swollen top lip your contributions are always exceptional so we look forward to hearing from you through the presentation.
Just last month I clocked over 25 years since I started working with people with complex disabilities, so, yes, I was only three years old when I started.
So it is an incredibly challenging area and I have learnt a huge amount over the time which I hope to share with you all today.
We have both been learning for 20 and 25 years rather than doing.
Launching into what is communication, we’re using a model today from Money et al who published this in the UK. This is model a inclusive communication and highlights the many factors that go into inclusive communication.
So on the outer circle is community and it is important that there is always a minimum of at least two people in a communication partnership and interaction, but we are part of a community that share language or ways of communicating together and that will help to frame and shape the methods that we’re using, and we have shared experience of culture and context.
The next circle is environment, so the environment has a significant impact on our communication, if it’s noisy and somebody has trouble blocking out background sound or if they have hearing impairment or hard of hearing, that can significantly impact on their ability to communicate, and even thinking about what objects or cues you have in the environment to support the communication interaction is significant as well.
Next we have the individual and all the factors that they bring to the interaction. We need a means, a way of communicating that is shared by both parties, we need a reason for communicating and we need opportunities and I think as we talk about people with profound intellectual and multiple disabilities later in the presentation, often those opportunities are very limited or lacking, so making sure that we’re regularly creating opportunities for communication.
So over on the left you need at least two people. We can’t communicate in isolation. It is a partnership, both people have a responsibility in the interaction. We need joint attention or a shared focus, so that’s the topic that we’re communicating about, and sometimes with people who don’t speak, it is harder to work out what the topic is, so paying attention to what the individual is focusing on is really important. It might be what they’re looking at, they might be very still when they’re tuning into something, so being very attentive and clear that we’re sharing attention and sharing the topic.
We also need a shared mode, so if I was in France trying to use English language, that might not work so well, so I might use the environment and things in the environment to point to, in a shop pointing to what I want, if my language isn’t working and trusting that they will understand the gesture of a point and what I’m pointing to. So making sure both people understand the mode is really important.
Another important thing to consider is that we often think of the active person in the interaction as the one who is sending the message, but it’s important to be mindful that both people, the sender, and the receiver of the message are both active at all times, so the receiver is taking in the message, processing what it means, working out what their response will be, so it’s a very active process whether you’re the sender or the receiver of the message.
I think one of the things that both Meredith and I have found through being researchers, traditionally we like to look at the idea of the sender and the receiver, the person who initiates and the person who responds, but, actually, if you look really close at videos of interaction, it could be really difficult to know sometimes who the sender and the receiver is and who initiates the responds, because we’re constantly reading each other.
Yes. I’ve filmed somebody interacting with a person with a disability and it was said it looked like she was dancing with her uncle during a wedding, so that is a good point.
Just looking at Australians with communication disability and looking at the bureau of statistics survey of disability, ageing and carers from 2015, we see that 5% of Australians have a communication disability. So it’s pretty high numbers. They then classify them into mild, moderate, severe and profound limitations. So when you look at people with profound and it says people who cannot understand or be understood at all, and always need help.
So I think hopefully through the presentation today one of our key messages is that all people can communicate and it just takes a skilled sensitive partner, so just being mindful of that. I think we’re going to focus particularly on those with severe and profound communication disabilities today.
Looking at causes of communication disability, it is useful to use the World Health Organisation’s – I’ve gone blank – impairment classification of functioning?
We both have a mind loss on that one. We can go past that one.
They look at body function and structure and any issues with body structure and function. You can look at sensory impairment, so that might be deafness where you are not able to hear speech, or if you’re blind and somebody points and says “That thing over there”, that is not going to be meaningful to a blind person. Having a sensory impairment will impact on your ability to understand and interpret speech.
Having a physical issue such as cerebral palsy or cleft lip or palate can impact on your ability to speak, not necessarily your ability to understand speech, but the communication method that you use, and also cognitive impairment will significantly impact on your ability to both understand and to use speech.
You can also have combinations of two or all three of those to create a more complex communication disability, and it’s useful, the model of the ICF, looking at participation.
So in this model we have the body function and structure and any impairment, then activities being undertaken and the participation, also with environmental factors and personal factors impacting on the person’s ability to participate. So I’m just going to give two examples to highlight how this model will work.
If you think about someone who is hard of hearing, so that’s the body function and structure, there’s an issue with their hearing, and they might be in a very busy shopping centre trying to have a conversation with somebody. Take into account personal factors, they may be quite a passive person or non-assertive person and having a lot of trouble hearing and so they might just sort of be nodding and not really fully following the conversation, so that limits their participation in that interaction.
If they have the personal factor of being more assertive, they my say “Can you look at me when you’re speaking or repeat that or go somewhere quieter?”, that will increase their ability to participate in that interaction.
With physical and cognitive impairments, and perhaps cortical vision impairment, where all three areas are impaired, a familiar and quiet environment might be better, they might be doing a cooking activity, and the personal factors, they might have done that many times before, they have a communication partner who knows them really well and can present the food and ingredients for cooking very slowly so they have time to focus and participate. So taking all of those into account helps a person to participate as well.
I think you have examples as well?
The impairment doesn’t dictate the participation. I was working in a group home and one of the women has cerebral palsy and a very severe impairment, motor impairment, couldn’t create any words, but has amazing social skills and could participate in the community so well and say through yes/no questions and eye gaze actually direct me to another suburb where to go.
Whereas one of her house mates, who didn’t have that level of severity of impairment, he had speech, but he actually had a lot of impairment in social communication skills. He was difficult to spend time with because he just spent a lot of time complaining. So he actually had a lot more participation restrictions than what the person with a more severe impairment literally had.
I’m confident that ICF is the Information Classification Framework.
We have talked about it a little bit already, that communication are two different sides of the same coin. Communication is made up of understanding, so taking in information, understanding another person and being able to express yourself. So we talk about receptive communication, receiving and understanding, and expressive communication, so sending the messages.
With understanding we might be able to hear words and understand words, but tone of voice also has an impact on the message, facial expression and gesture, pictures and writing might also be used to supplement or be in isolation that those are used to help send the message so that the person understands in that way.
In terms of expression, we’ve got signing here. Signing also is a way of understanding meaning and we can express with words, with speech, which is written or spoken with signs, single signs or whole sign languages, also with gestures, facial expression and vocalisation and we will talk more about these different modes, but it is just really important to remember that an individual may have a different way of receiving information and understanding as they do of expressing.
So just because somebody can hear and understand speech, doesn’t necessarily mean they will be using speech, and also just because someone can hear doesn’t mean they can understand speech necessarily. So it is really important not to make assumptions or presume competence or incompetence.
If people’s expression is described as non- – verbal, to me that means they’re not using words to express themselves. It says nothing about the person’s level of comprehension or their understanding.
So a baby is non-verbal, but Steven Hawking was non-verbal, so I tend to avoid that it term like the plague except where people have self-described it, that they’re non-verbal, that’s a definition they choose. I think there is too in much of a tendency, whether in nursing homes or day centres if the person is nonverbal. There is too much of a tendency to jump to the assumption that that means that the person is non-understanding.
That’s a really good point. Just building on that point about terminology and what individuals prefer to use for themselves, Sheridan and I will be using a variety of different terminology today and we both fully recognise that the terms we use may not be the preferred terms of individuals. It is completely up to the individual to decide which terminology works best for them and how they want to identify. The terms that we’re using are not necessarily the terms that others would be using and we completely accept and acknowledge that, but we can’t avoid terminology when you’re trying to describe different populations of people. So I just wanted to add that.
I try and use as concrete terminology as possible. I say that a person who does not use or seem to understand speech.
Which is really beautiful and clear, yeah.
Looking at different modes of communication we have got… Literacy is sort of considered one of the highest orders of communication because if a person is literate, they have a lot more options for being able to express their thoughts and ideas and anything they are wanting to get across. It is quite a high-level skill, but even a person who has no speech and who has literacy skills like Steven Hawking can write a PhD or a book, contribute at all levels of society.
So literacy is a very powerful skill to have if you have the cognitive capacity required for literacy skills. With literacy we have print options, which for people with a vision impairment might be large print, or braille, or finger spelling for people who are deaf or hard of hearing. So I guess that is a range of people who may not be able to speak, but still can express all the different ideas and messages that they have.
Next if we look at speech, speech in any language, or Auslan sign language, or any other sign language, there are still a lot of abstract ideas, but you would know that young children learn to speak before they can read and write. So it’s that step before developing literacy, but you’re still able to understand with speech a lot of concepts if you are able to understand speech.
When we look at key words signed, pictures and photographs, these are all ways of expressing an idea or a concept in a more concrete sort of a way, and when we speak, our word disappears very quickly. So if you have trouble holding a concept or that spoken word in your mind, which a lot of people with cognitive impairments,
if you offer three choices, do you want milk, juice or Coke, that might be too many words. As you’ve said milk and moved on to juice, they’ve forgotten milk, but if you can hold two or three pictures, it gives them longer, the images stay there for longer so they can look and process that information.
Also if you’re talking about a drink, do you want a drink, as soon as I say drink that disappears, but a key sign for holding up a cup lingers a bit longer and also looks more like the real thing, and a picture or a photograph look more like the real thing than the word drink, it doesn’t really have much bearing on what an actual drink is.
So those are other ways of communicating and sharing information with a person and a way that they can share information by holding out a picture or holding out an object to express what it is that they’re wanting that might be more meaningful for someone with a cognitive impairment.
So all of these ways are considered symbolic. They’re symbols to represent ideas, concepts or things in our environment. Then there’s ways that are non-symbolic that people with more profound intellectual disabilities will be using to express themselves.
So if we look at vocalisations, facial expression, body language, and really any behaviour. So even a person’s breath pattern can be tuned into to show that we’re paying attention to that individual, and any sort of movement that you can engage in with the person to indicate that you’ve seen that movement and that behaviour. But we will get more into that down the track.
Meredith just brought up the idea of profound intellectual disability and I think that’s just a nice quick segue on to thinking about profound intellectual disability because in Australia we don’t tend to use the term a lot.
We tend to think that to suggest that somebody has a very severe intellectual disability, some people feel that that might be a value statement on the person, that we’re suggesting that they’re a lesser person. But Merry and I are both stating that there are people who have a profound intellectual disability which means they have a profound difficulty with concentrating, with attending, with remembering, with problem solving, and we need to understand how they understand the world.
So we will often use a term “profound intellectual and multiple disability”, and on its most gross level, and it might be discomforting for a lot of people to think of this, we are looking at the skills that are similar to what we might be seeing with an infant, but then an infant who probably also has a hearing impairment, a vision impairment, medication and a multitude of other things. So acknowledging the different experience of life that is held by a person with a profound intellectual disability. Were you going to talk about key word sign?
I think you will talk about key word sign.
OK. Just quickly, for those who understand symbols, and that would be a person without an intellectual disability, a person with a mild intellectual disability, many people with a moderate intellectual disability, and some people with a severe intellectual disability, may understand key word signs and the principle of key word sign is that you sign and speak at the same time, but you sign only the key words.
You might only be signing one sign in a sentence to represent the whole idea. So do you want a drink? That only requires one sign. It is also using your body language and your facial expression and directionality, and symbols where they’re appropriate, and some use of finger spelling.
It is interesting, the sign for toilet, which is this the image on the right, is pointing your finger into your hand. Unless you know that that is a sign for T, that actually resembles nothing to do with the toilet, I don’t think. So you can think about the complexity of how does this relate, but there are a lot of signs that do look like what they’re meant to like drink, like eat and the best signs are the ones that are most obvious, so don’t worry if you don’t know any signs because what you can come up with to augment your message is most important.
People might also be using objects or pictures or technology. Again, thinking about toilet, for some people the sign for toilet might not be the finger stuck into the hand. It might be a hand being rubbed down their side because when you go to the toilet, you take your pants down. It feels like this. So not everybody is going to adapt to the same signs everybody else or use the same signs as everybody else.
Similarly with pictures. We have four different images here. One has some objects on it. One of them is a belt buckle for the ID of going home. If you use that regularly enough, maybe somebody a person might be able to make the link that when I touch this belt buckle, it means that I’m going home. Again, for a lot of people, what does going into the van mean? What does it feel like on their body? For a lot of people it is a strap going across their body. So a strap might actually make more sense if that person never actually interacts with a belt buckle.
Then we have much more complex things like different sorts of pictures and we could talk about the picture for death, how do you represent death in a way that is meaningful. For some people have an accepted one. Some people use the pod communication books which are able to capture all the sorts of words or as many as they can to be able to have a conversation using the booklet. There are some wonderful videos of people using PODD communication books to be able to express themselves.
There is electronic devices, from the most simple ones that have a single message recorded on it, but, again, check your presumptions about what that actually means to the person who is pressing it. So if the person presses a button and it gives you a lecture on astro physics, does it mean the person understands astro physics or does it mean that the person understands that pressing a button makes a sound. So you need to be able to understand where that person’s understanding is and how it might serve.
Then communication apps are hugely popular. The bottom images of the app to go is a popular app and works well for a lot of people.
Strategies with symbolic communicators. Merry?
I will talk briefly on talking mats which is a useful strategy with people who have trouble understanding complex speech and it is a useful strategy if you’re trying to have a more complex discussion or make a difficult decision that has got a lot of components to it,
so a good example of a time when you might use talking malts is if you’re looking at moving house, moving out of home into a group home or some other living arrangement. You might get all the images that you need that are important and will be necessary in the conversation. So you might have an image showing that the house is close to public transport, an image of family, an image of day service or other activities that the person likes doing.
You might have a picture of a house or a flat, something with stairs, and the person can look and rank or look at all the things that they can consider when moving into a house, do they want to live by themselves, do they want to live with people, is it important that they live close to their family or is it more important to them that they live close to a friend or some other preferred activity. What is most important to that individual?
By mapping it out with pictures, it is easier for them to make some of those complex decisions and rank things and put links to other things that are also important, and you can take a photo at the end of the document so that it is really clear and they can go back to it and, perhaps, change or build on it at a later time.
That’s just an example of using talking mats, but you need to prepare the images.
You can also just using pen and paper and drawing some of the things, you can add things as they come up. But having it all there in a very concrete way in front of the person so they can shuffle images and ideas around is a useful way of helping the more complex discussions and decision making.
I will also just touch on interpreters and communication guides because I work with people with deafblindness. A lot of people with deafblindness but also people with intellectual disabilities often need what we say is human mediated support, so having someone who knows their way of communicating as well as the person they’re communicating with.
So today we have Auslan interpreters who are interpreting English to Auslan but would also interpret Auslan to English, so making sure that the message is interpreted and relayed back and forth.
Communication guides with people with deafblindness are not interpreters, they might be familiar with Auslan, but they can assist out in the community, so when the person is shopping, if they need some information, if there’s an interaction with a shopkeeper or a person at the checkout, that the communication guide can help to bridge that interaction and sign and relay what the individual has said and then voice for the person who is deafblind that is using signing that the person in the community wouldn’t understand.
I think also staff who know people with intellectual disabilities very well can also support that interaction with others by mediating and interpreting the behaviours of the individual with an intellectual disability, but also relaying the information to the person with the intellectual disability.
I think in one of my recent chapters (not wanting to plug), I called them ambassadors. You know, staff and advocates, are ambassadors for a person, and the role of an ambassador is not to sell of utopia, but to gain a shared meaning.
There’s so many great tools out there for people with mild and moderate and severe intellectual disabilities when it comes to advocacy and it just reminds me when you say that,…. I recommend if people look up “Involve Me”, if they type in “Involve me PMLD”, that is the term that is used for profound multiple learning disabilities in the UK.
The “Involve Me tool” is probably about 10 years old now, but it is a tool specifically thinking about people with profound intellectual disability and how advocates can work with them. And I think Merry, I will just steal this slide from you on the importance of relationships because I think one of the things that comes up most clearly in the “Involve Me tool” is that you cannot advocate with somebody if you have not got a relationship with them. Merry and I would probably agree, but not everybody that – you cannot understand somebody’s communication or assess their communication unless you have communicated with them. Assessments by observation alone don’t cut it in my opinion.
There is a different sort of understanding that you get of a person when you try to genuinely engage. So the importance of relationships, this whole communication thing is about relationships. Communication is never, ever individual. Assessments of communication can never be individual because you don’t see communication in a bubble. It’s all about building respect and trust through interaction and that is what a lot of the tools that I’m going to move on to are focusing on.
Did you want to add anything on that one, Merry?
No, that’s fine. I guess just that interaction no matter how fleeting, any interaction, there’s always that opportunity in every interaction and every moment of interaction to be building trust and respect, and the way that you bring yourself to the interaction has significant impact on the quality of the relationship down the track.
I think that’s true for any interaction and any relationship, but definitely with people with profound intellectual and multiple disabilities because those interactions can be more challenging, so it’s something to really pay attention to how are you going about respecting and engaging in a way that is meaningful with that individual.
Sometimes that’s also about ACKNOWLEDGING your own discomfort. We don’t talk about it enough. One of the biggest barriers for people with profound intellectual disability is the discomfort, the INSECURITY of communication partners, the desire not to insult. It’s a confusing land and that needs to be acknowledged because it is hard.
I think just something on that, one of the things that makes it very challenging is as Sheridan said, a lot of these adults have the cognitive capacity of a six to nine month old infant and they might be 40 or 50. So engaging with someone in the same way that you would engage with a very young baby or child is really profoundly challenging to many people.
Yeah. There’s three areas that I would like to talk about, intensive interaction, the Hanging Out Program and the Video Interaction Guidance.
Firstly, intensive interaction, which was developed in the 80s in a hospital school in the United Kingdom. The authors had people in the institution who weren’t making any gains, who weren’t coming to the table to do activities and they relooked at how communication normally develops, how people usually learn to communicate and they look at what happened in parent or mother-infant interaction.
They came up with what was called the fundamentals of communication. These are the goals that you’re looking at. How many years have you seen on somebody’s general service plan the person will learn five signs? And it hasn’t happened? How often do you see these goals? The things they have here: enjoying being with another person; developing the ability to attend to that person; concentration and attention span; learning to do sequences of activity with a person; taking turns in exchanges of behaviour; sharing personal space; using and understanding eye contact, facial expressions, physical contacts, other nonverbal communications; vocalising and using it meaningfully, including speech, and learning to regulate and control arousal levels, which is actually one of the primary things in any parent interaction, learning to regulate the arousal level of the baby you’re with. You’re trying to excite or calm them. The last element, lots and lots of emotional elements.
So these interactions intensive interactions can look quite different from what we see as typical interactions, but they definitely have been recognised in the UK and slowly in Australia, as a valid way of being with people with profound intellectual and multiple disability and other disabilities.
So can I get you to play the first video for me?
We have Dylan and it is a video that is from the intensive interaction website. He is sitting on a couch rocking back and forth, sort of gazing into the sky, flicking at his nose, pulling a sock, seemingly not engaged with the world around him. This is often what we see for many hours for some people.
Now we see a partner who is sitting down on the floor, her face is lower than his, he is making a sound and she is repeating that sound. She is letting him know that she heard that sound so that he knows that sympathy knows what he knows. There’s different sorts of sounds. You can hear, perhaps, a different sort of mood that is expressed with the sounds through pace.
He gazes at her and smiles. This is somebody who does want to engage, but it is incredibly difficult and his modes, his means for engagement are very difficult. She is also maintaining contact with her hand on his knee the whole time. He lifts it off and takes it up. We certainly met some people who find it very hard to put themselves in a positive head space watching that video and say, he wants her to go away when he lifts the hand away. We would challenge that. It’s just part of the conversation.
I was just going to say I’ve been engaging with people using intensive interaction for a long time and I’ve had moments where I’ve thought am I annoying them, I’m not sure. One thing I have discovered over the years is if someone really doesn’t want you doing something, they will tell you, and so it’s made me more confident that people invariably will let you know if you’ve gone too far with them. We all have the right to negotiate. We all have interactions that we’re not enjoying. That’s part of human life and so it’s okay to – as long as your intent is to engage and interact, it is okay to get it a bit wrong.
I think one area that irks me with intensive interaction is a lot of focus on fun, having fun together, and I think it is just as important that we share sad times together, that we validate pain together, that we share those negative feelings rather than always trying to make somebody feel better, saying “Ooh, it’s hard, isn’t it”.
That’s one of the most amazing tools with a lot of people, that I use with a lot of people with autism, when they start showing through their body language that they’re a business distress red and instead of interpreting that as go away, I interpret that as “bloody hell”. So what I will say, and this is often if a person does understand speech, I might say “It is hard, isn’t it?”. You see this change in body language where the person feels understood. The power of actually feeling understood by another person is unwordable. Sorry I’ve forgotten my word.
Let’s look at this other video of me with Christopher a number of years ago. Christopher is in a wheelchair and leaning back in it. I’m sitting quite close to him. Intensive interaction is not always close, but sometimes it is. Sometimes it needs to be if a person has a vision impairment. Sometimes it is across the room.
I’m squeezing his hand because he is squeezing his hand. That is where his focus and attention is. His attention is now the sound. I repeat that. I let him know he is heard and respected. My hand is available to him so he can reach out. You can only say what is available to you. You can only say give me your hand if a hand is available to you. I do a lot of placing my hand in positions where the person could grab it should they want to. It is a way of saying “Oh, you”.
I rub his knees. It is like he is pausing and thinking about it. He does a flick on my face and I make it into a game and then he does a burp. Now an important thing with this actually I will wait until it stops. I’m rubbing my mouth on his hand and he is again thinking about what I’m doing. That’s his dad in the background also saying “ah”.
Now a person can only take turns when a person can actually do the thing required in the turn. Now, if I just use speech with Christopher, we have no capacity for him to take turns. He is not going to use speech back to me, but if I use his sounds, we have capacity to take turns. He can make his sound, I can make his sound. I can make it louder or softer and shape it and give it different feelings and expressions. We have shared meaning.
So something that I developed more than ten years or so ago now is called the Hanging Out Program. It took a little bit of a paradigm shift because I was doing my research and I asked a support worker do you still spend that nice time together. She said to me when the work is finished.
That was really profound for me and it shifted my whole thinking from teaching support workers what to do to saying that interaction is not an optional extra of the work of support workers. Interaction is the core role that you need to find ten minutes each day and give a person total attention, right down and reflect on what happened. Celebrate if the person stayed awake during that ten minutes or the person gazed at you or reached out to you or remained in the room with you.
So I would recommend that people have a look at the HOP program on my website and think about do the people they support or do you as an advocate actually sit down and give the person ten minutes of 100% attention?
The whole aspect, I know a lot of staff have said we interact with them all day long, but their version is hello, Meredith how are you going? I like your top today. It looks great. Time go bowling. It is not interactive but someone being spoken to all day long.
The key of the Hanging Out Program and intensive interaction the individual gets to take the lead. It is rare that these are leading the interaction, deciding the topic and mode, so that is one of the key differences about these approaches to other approaches, and it is social, purely social. It is not functional. If you look at any measure of quality of life, personal relationships and social interaction are always features of any quality of life tool and so we need to be looking at how we build and develop social interactions and relationships for any individual we’re working with.
This is a technique we have been using for a number of years that came from the UK, Video Interaction Guidance. It involves a person with a disability, a support worker and guide, and the guide will need with the support worker and say are there any goals that you have.
Quite often they don’t have goals because they don’t know what could be different. The guide will then video ten minutes of a natural interaction and then look at that video and find those gems, those moments when there are connection. Like you could see in those two videos in intensive interaction, but it doesn’t have to be intensive interaction.
So they look for those moments and then they share those video clips with the support worker and guide the support worker to be able to deconstruct them to say what is working, what is happening.
Often we use what is called the principles of attuned understanding and guidance, being attentive, encouraging initiatives and we’re looking for these things which you can find on my video as well, or the website, you’re looking for evidence of these things happening.
Now, people might think it’s a bit of a no brainer being attentive, but actually having somebody sit down and gaze at you and look at what your foot is doing or attend to your breathing is be very rare for a lot of people that we support. We can see when support workers do sit down and attend to the person, the response of the person with a disability is different. The interaction is better.
So we will look at other ways to try and build in that just showing the person that you’re attentive to them. There’s a wonderful concept in video interaction guidance called receiving and receiving means the person knows that they’re being understood. So I might see Christopher doing something, but unless I let him know that I know what he knows, he doesn’t know that I knew what he was doing.
It is like sending out a text message and not knowing whether the person actually received it or not. Communication doesn’t happen unless you know that you’ve been heard.
So what happens with VIG is often three or four cycles of sitting down and watching these videos can make massive shifts in the interaction, in the ability to see what is working because we believe there are things that are working, but often they’re severely overlooked or devalued and we need to have conversations about that.
Merry working with speech pathologists.
I’m mindful of the time so I will whip through this quickly.
So you are aware that it is really important to find out what is the level of ability of the person that you’re advocating for in terms of what do they understand, understand receptively, as well as what is the best way for them to express themselves.
So a speech pathologist is well placed to undertake that assessment and will have a range of assessment tools they can use to work that out, and they will be able to make recommendations around ways to support the individuals’ understanding and ways to support their ability to express themselves.
In terms of finding a speech pathologist, there is a “Find a speech pathologist” link on the Speech Pathology Australia website, but as Sheridan mentioned, people with profound intellectual disabilities make up a small percentage of the population of people with disabilities, and a lot of speech pathologists won’t have experience working with that population. So it is definitely worth asking if the speech pathologist has experience and if they’ve used intensive interaction or are familiar with it. That is a good indicator that they have worked with this particular group before and will have some good ideas about strategies for working with them.
It is hard to find speech pathologists at the moment. I recommend working with creative arts therapists, art, dance and music, all who are often very skilled at nonlanguage-based interactions and will be well trained at being very observant and responding to the behaviours of the individual. So occupational therapists as well and physiotherapists, but I guess the key thing is that they have experience with working with this group of people.
I just want to quickly touch on it is well worth you looking at – when you ask speech pathologist, these are the things you want to see in a communication assessment. They’re called the five communication standards that came out of a lot of – as a result of a lot of the abuse in care homes and with people with challenging behaviour.
What the Royal College of speech and language therapists said was needed was a detailed description of how best to communicate with individuals. You need to see the individual in the report, not just a cook book of the person. You need services to demonstrate how they support individuals with communication needs to be involved in decisions about their care. What is the way, how do they use supported decision-making. What is the best way to find out their preferences. What do staff value – do staff value and use competently the best approaches to communication with individuals they support? So are they using intensive interaction or are they just using speech at the person all the time? Actually never really meeting the person on a shared basis of meaning.
Does the service create opportunities and relationships and environments that make individuals want to communicate? Do they sit down on the couch with the person or on the floor with the person? Do the individuals – are the individuals supported to understand and express their needs in relation to their health and well-being as well? So that’s what you want to see in a good report.
Maybe if you’re referring to a speech pathologist, share this with them that this is what you might want to see.
Our key take-home points, the four points, communication comprehensive skills can be different from expressive skills. For a lot of people I won’t – you don’t know when you first meet them and I might say to the person “I don’t know what you’re understanding right now, but I’m here to try and find it out”.
Engagement with people requires you to understand how do I need to be in order to be with you? So each person that you’re working with, you need to have an idea how you need to modify what you’re doing, whether it be the amount of eye contact that you’re using, the distance that you sit from the person, the complexity of speech that you’re using, how do you need to be in order to be with them. You can find out more about the person’s communication skills and everybody can communicate.
So do we have any questions?
Thank you so much for an excellent presentation. I’m sure everyone else finds this fascinating as I did. I was thinking to myself, we have a mandatory mask use in Victoria, how complex it must be for those with communication needs. With a deaf person myself, it is hard now, but I can only imagine what other people struggle with that.
We have some questions coming in. If you would like to type if in the question and answer box and I will get through as many as I can. All the resources where to find the Auslan classes will be on our website later on.
We have our first question up….
The person needs to understand the person’s intentions as well as in terms of understanding. This is a massive problem not only for those with autism, but theory of mind difficulties. Not just words or nonverbal cues, communication, need to understand the context and the reason behind is– which is social communication. If you can answer that question, that would be great.
I think that’s largely a comment, but it makes me reflect at the word of Tony Atwood when he is talking about speaking “aspergaries”. How do I need to be in order to be with you, a person with Asperger’s. Some of the common experience things like not thinking that the person necessarily understands the sentence in the same way that you understand the sentence.
So if we think about the phrase “the taxi is here”, a person needs to be able to deconstruct the taxi is here means I need to get my bag, walk out the door and get in the taxi. If you just look at that literally for a person with autism, the taxi is here, well, like, yeah, cool. Taxi. We have got to understand that not everybody thinks the same way that we do.
Sometimes we have to say things or do things in a more explicit way to actually get shared meaning. Sometimes we need to say I am leaving the room now, but I will come back in five minutes or I am coming to speak with you for an hour and then I will speak to the staff. Because if the person is not reading your mind the same way that you intend it to be, they don’t know what you’re thinking. So, yeah, we need to understand that not everybody understands what we understand.
I also note they mentioned social interaction at the end, and I guess I touched on that earlier, that such a strong focus on functional, like, getting people to say they need to go to the toilet or that they want food, and sometimes that social aspect of interaction is missed, so it is important to make sure there’s time every day for social interaction and that sharing back and forth rather than just the functional communication.
Sometimes we have to adjust our concept of what is socially right and socially fine, but sometimes – I remember an example of a man saying to me – I said one thing I like in the UK is how they do the postal system, which can get a letter to your house through the postcode, and he started reciting from Aberdeen, whatever, all of the postcodes in the UK. I said I don’t want to know all the postcodes in UK. He said, okay. Sometimes we have to adjust and sometimes our typical social qualities are pretty crap and the Aspie world qualities are actually more sensible.
Thank you very much for that. We have time for one more question, so go to the next question…
I am very interested in your take on the controversy on the use of AAC where someone physically supports someone to use the AAC. I know this is a very tricky one to answer, really prickly.
Shall I take that?
Sure. Over to you.
I have no fear. This is touching on the idea, I think, of facilitator communication which is when one person supports the hand or touches another person’s body while they are pointing to a communication device. They might be touching the person like that and pulling back, they might be touching the person’s arm or the shoulder.
A lot of research has suggested that it is more so the person who is touching, who is directing the message than the person who is moving their arm. I think there are varying circumstances of this.
There are certainly people with cerebral palsy that I know who need that physical support of their arm because of their physical movement problems to be able to type and they can clarify and say, they can confirm whether the message was theirs or not. There are people who cannot, clearly, confirm outside of the support whether that was the message or not.
There have been court cases, there have been dealings, there have been claims of rape, assault, all made through this facilitated communication thing. It is a very controversial area.
I would completely agree. In a NUTSHELL, it depends on the individual with the communication disability and it also depends on the facilitator and it is a case by case situation.
I think there are times when it is really effective and useful and times where it is possibly not being used in a useful way. So I think there’s not a hard and fast answer to it. It is a case by case.
Certainly there has been cases where I’ve assessed a person and suggested that they have a profound intellectual disability that they don’t have speech, that they are not producing spelling and I’ve had another professional say they have been spelling using facilitated communication.
Thank you for that. We have run out of time. Thank you so much to you both for your presentation today and the fantastic work that you and Able Australia do.
The recording of this webinar, slides and resources mentioned today will be uploaded on the website in a few weeks.
Thank you to the Auslan interpreters and captioners for their hard work today. Thank you for show the vision for bringing this production to you today.
Please stay safe, wear your masks, wash those hands and stay home. See you next time.
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- Date published:
- Thu 30th Jul, 2020