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Reducing barriers to inclusion using wearable technology



Transcript

Heather – Good afternoon everyone and welcome to today’s webinar on ‘Reducing Barriers to Inclusion Using Wearable Technology”. My name is Heather Evans, and I’m the Managing Director of the Community Living Ontario Foundation. And I work with all of our strategic partners. And today we’d like to say a special ‘thanks’ to Awake Labs for putting this presentation together. Awake Labs builds apps to measure stress and strong emotions so people can spend time enjoying their life together. You will be hearing from Paul a little later in the session, one of Awake Labs’ Co-Founders.

Thank you so much to Awake Labs for sharing today a variety of guest speakers who will share the success of their technology. And throughout the presentation, as we move forward, people will introduce themselves. Ok – but just before we begin everyone, I want to share a few housekeeping items because these questions typically come up. All attendees’ microphones are muted but we encourage everyone to ask questions through the question panel. And at the end of the formal presentation, we have reserved time to look after those questions. And if you have someone in particular who you think should address the question and you would prefer that, then please put their name with the question to help us when we’re moderating at the end of the session. The webinar will be recorded today and made available to everyone who registered via email. You will receive the email shortly after the webinar. If not today, then likely tomorrow. And we encourage people to check the junk box because sometimes we’re noticing the recordings are going there. And if you have any problems at all receiving your recording, feel free to reach out to me. My name is – My email is all over, I think, the GoToWebinar emails that are coming out. So without further ado, I’d like to hand things over to our first guest speaker today, Kayla. Welcome. Kayla – Hi everyone. My name is Kayla Wratschko and I work for the Community Living Association for South Simcoe or, as we call it, CLASS. So I’m not from Awake Labs, but we do partner with them. I am a part of our clinical team here at CLASS and I work as a Behavior Analyst. That means I’m in the homes a lot working directly with the people we support, as well as our staff, to do some training and also to develop programs that are going to support ongoing learning. And that then can be also used to reduce some challenging behaviour as well by replacing that challenging behaviour with more functional skills. So the focus is really on behaviour change and I am a huge data nerd as a result. So that’s a little bit about me. Just – yeah. Just talking about Awake Labs and the watch. It’s been really amazing to work with them. But the way we got here was we started by looking at our population of people that we work with here at CLASS. And we noticed that we have a lot of really anxious people. And then the one thing we started to notice is that anxiety seemed to be a bit of a precursor to other challenging behaviours, like agitation or aggression. And that was something that we felt we weren’t doing the best job that we could be in addressing it. So as a Behaviour Analyst, I really focus on behaviours that are observable and measurable. So we try to – in our behaviour support plans and other protocols – we try to really explain what anxiety looks like. And, so sometimes we were using terms like ‘pacing’ or ‘increased volume’, ‘isolation’, ‘changes in breathing’, those kinds of things. But the one thing we know about anxiety is that it often starts more internally. And that is really hard to observe because it’s not something we can see. If your heart rate increases, I don’t know unless – like, me, get that nice little panic flush in which case, you know, my heart rate is increasing. But because it’s happening internally it also makes it really difficult for some of our support staff or other supports to recognize those really early signs of anxiety. And the really early signs are when it’s – when interventions are going to be most effective. So that inability to observe and then measure some of those anxiety behaviours means that it’s more difficult for some of our supports to build a rapport with people we’re supporting, to develop a trusting relationship. And it can sometimes result in anxiety getting past that point where people are able to respond to interventions being offered. And they may kind of shut down and engage with those support staff and move on with their day. So we really want to make sure that we could connect with those people and support them in the way that they need it most. Because we weren’t able to see what was going on inside of them, that made it really difficult for us to support them. And that’s why we decided to partner with Awake Labs to look at anxiety going forward. Kathleen – Hello. My name is Kathleen Gifford and I am so grateful to be included in this panel. Thank you to all of you for joining us here and much gratitude to Awake Labs for the great work that you are doing. I am a mother of a 24-year-old son who is intelligent, has opinions, is a brilliant artist, and one of the teachers I’ve had the pleasure to learn from. David has autism, is nonverbal, and has a brain injury acquired at birth. The reasons David’s father and I agreed to do this webinar to share our story is for this one statement we always seem to hear. “That might work for the person that YOU support, but the person I support is not capable to achieve that.” Whenever someone, David or others, has a success, with learning a new skill or being reciprocal in a relationship, there has always been a skeptical family member, EA, teacher, or other professionals that make that statement. I’m here to tell you that that person you are referring to is my son. Life has been difficult and uphill for David his entire life mostly because people have perceived him as incapable when actually he is being so trapped by anxiety. The manifestation of this anxiety is self-harm, which he would engage in more than 700 hits a day at some point in his life. Most people in David’s life treated this self-harm as a make up of his disability. Still to this day, David is not diagnosed with an anxiety disorder. As someone who has lived with David for a couple of decades, I know without a doubt when he can receive specific support and information at a crucial moment he can be included, enjoy being around people and activities, and can trust us with his dreams. When we can quiet his anxiety he can confidently make choices. When he got in the habit of making choices, we began to realize his dreams. When building towards these dreams, he is perceived as human, relatable, and even admired. David’s day-to-day life was very small. One day looked like the next, and we all believed that he could not tolerate change. He was kept out activities at school and he became very successful at keeping people at arm’s length. He did not want or seem to like social interactions. We tried hard to change this but always fell short of success. As time marched on, David removed himself from more and more activities. And as our daughters grew and became wives and mothers, David could not tolerate family dinners and hospitality was the heart of the Gifford household. We were heartbroken but went on with family dinners telling David he did not have to go. David always seemed a little sad about this, we all were, he seemed to be relieved at not having the wear and tear of attending. A family dinner looked like this: it began as hopeful when David would enter the home of the host. As we would wait for dinner to commence, anxiety would already be stripping David of his confidence. Disruption would ensue, conversation would cease, and result in us needing to leave, oftentimes without finishing a meal. The drive home was filled with disappointment, tears, and even at times resentment and frustration. David never seemed to be able to make that dignified exit. Consequently, he grew up alone, lonely, and isolate. We tried many strategies and interventions. A few of the better attempts are pictured here. So always with lots of planning, including what worked best with David. We even tried him and I sitting just off outside another room when the family dinner was happening in another room. And we even tried a service dog, which helped him at school but not really anywhere else. All these strategies just fell short of the main goal because none of them alerted us to some early signs of anxiety. So year after year, with every birthday, David grew from a child to a man. His dad and I and family were fairly progressive-minded, and therefore had many allies in the developmental field. There was a lot of people who knew of David, were rooting for him, but most had never even met him or say that they knew him. David became more and more isolated all the time he was growing. At the same time, his artwork was gaining more attention. The community that rooted for him continued to grow, yet they were completely shut off from one another. More people than ever were getting to know of him and learn about him, but David still did not have a single relationship that was not family or paid support. Thank goodness this is not the end of the story. Paul – Thanks, Kayla and Kathleen. I really appreciate both of you sharing your stories. Something that is – I appreciate every time you tell it. So what Kayla and Kathleen have shared with us about how stress has had an impact on their lives and the lives of people they support. That’s exactly the reason why, at Awake Labs, we decided to build our technology. Because our goal is really to help people better understand and manage their stress so they can spend more time enjoying their life. And for the next few minutes, I’m going to tell you a little bit more about our technology. And after that, we’re going to hear from the panelists again who are going to share some of their own experiences with this tool that we built. So what is it? Our technology – it’s an app that uses a smartwatch and a mobile device. Now the smartwatch, which is this one right here [*shows watch*] is a Samsung Galaxy watch and it’s worn a person who is being supported. And the mobile app displays in real-time their levels of strong emotion. Those strong emotions are both positive and negative. So it can be something like stress, but it also measures excitement, fear, and anxiety. Now the mobile app is used by the caregiver of the person, and that can be a family member or a personal support worker. The app uses a clinically-validated algorithm that was developed by scientists at Holland Bloorview Hospital. So when I put on my watch, the algorithm that was developed looks at my heart rate and my motion, and calculates one simple score that captures all of those strong emotions. And on the mobile app that shows up as a measure of either normal, low, medium, or high. And the watch itself works just like a regular watch. It shows the time and the date and our technology runs in the background. When a strong emotion, such as stress, starts to increase, that’s when there’s a notification that’s sent to the app on the caregiver’s mobile device. Now, this is an important point because the notifications are designed to be sent in the early stages of stress, which means you’re not always able to see any external signs of how a person is feeling at that time. So what the notification is – it’s really a way to let the caregiver know to check in with the person they support. And because it’s sent in the early stages of that stress, the visible signs may not be there. But by being aware that the person you support is in the early stages of stress, then we hope that you as a caregiver can provide some support before that emotion escalates. Now, as a caregiver, you and the person you support will likely have some strategies already in place to help address that stress. And we encourage people to use existing techniques for early intervention. Things like deep breathing or even leaving the stressful situation, and talking to the person about how they’re feeling, as a way to kind of respond and cope with the situation. When a notification is sent, you have a chance to respond to it on the app and write a short comment, such as what’s happening at the time that the notification was sent, or what kind of strategy you are using to respond. Pretty much any information that is most useful to you. And what this can help – is help you look for patterns, learn about different triggers, or maybe see if certain of these intervention techniques are working better than others. Not only does the mobile app send you those notifications in the early stages of stress, but you can see the real-time information on the home screen of the app. And another really important feature is the ability to go back and look at past data, such as the summary of data over the past hour or daily summary going back as far as two days ago. So in those screens, you can also see the notifications that were sent and responded to during that time. And we heard from caregivers who use the app that this particular feature is really useful in helping them reflect on patterns in the data and can help build cohesion and collaboration within the care teams because everyone who supports the person has access to this data if they’re using the application, and use it to better understand how the person they support is feeling. [Paul’s mic mysteriously turns off. This transcript skips the technical difficulties to get it back]. Yes. OK. Good. So. But another important feature of the application, outside of the home screen where you can see real-time information, is the ability to go back and look at past data, such as the summary of data from the last hour, and a daily summary going back two days ago. So in those screens, you can see the notifications that have been sent and responded to during that time. So what we’ve heard from caregivers who use the app is that this feature is particularly useful in helping them reflect on patterns in the data. And what it can also help with is actually help build some cohesion and collaboration within the care team because everyone who has access to the app can see the same data and can use it to better understand how the person they support is feeling and use it to work together and inform their approach. Ok. Now, last but not least in the features of the app, is a very important one called “Feedback and Support”. So because this is a new technology, we know that it does take some time to get used to using it. But luckily with this feature, anytime that you’re using the app and have a question about it, you can press the button on the app and our team will respond to it within that same day. OK – Sorry I just want to check to see if I’m still being heard? Heather – Yes. Paul – Yes! Perfect. There’s a couple of important things that I want to share with you about the technology today. So the app itself is only compatible with this version of the watch, the Samsung Galaxy watch. You will only receive notifications when both the watch and the app on the mobile device are connected to the internet. So when the watch is not connected, it can store data and send it to the mobile app when the watch reconnects. But in order to get real-time notifications, both devices need to be connected. And the other thing is that we are in fact looking for people who have existing support strategies to help manage stress when it occurs. This means that when a notification is sent, you should already have some strategies in place to help you respond to that situation. We designed our technology for people who have an intellectual or a developmental disability. Now the person who experiences stress wears the watch and the mobile app is really meant to be used by their caregiver, wheth