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, whether that’s the family member or a support professional. And our technology measures many strong emotions, both positive and negative, and we don’t want to send alerts to people if it may, in fact, increase their stress level. Which is why the app is being used right now by their caregivers. But if you are a self-advocate and you want to use this technology for self-regulation, we’d love to hear from you. And we’re going to be sharing our contact information at the end of the webinar and you’re welcome to send us a message. Alright – before I turn the mic back over to the panelists, just some final reminders. First – the technology that we designed is designed to send notifications in the early stages of stress, which means it might notify you before there’s any visible signs that person wearing the watch is experiencing something. And the technology is only as good as the strategies that you already use to help the person you support manage that stress. Because really, it’s just a tool. It’s never meant to replace the voice of the person you support. It’s meant to give you additional information to better understand and better manage stress. And now, to tell you more about the technology and now it’s helped manage their stress, here are Lita and Kaitlin from Community Living Windsor. Lita – Hi – my name is Lita. I’m 24 years old and live in my supportive home with Community Living Windsor. Before I wore the watch, my anxiety was extremely hard to cope with. I used my parents as a way to help me cope but whenever they weren’t available I quickly became upset. This would cause me to become very angry, yell, and swear. Staff was not able to help me as they were not able to develop a relationship that I could trust. I was also hospitalized several times due to my anxiety. Your turn. Kaitlin – And my name is Kaitlin. And I’m a Direct Support Professional with Community Living Windsor for nine years. I’ve been supporting Lita as her coordinator for 4.5 years. When Lita first moved into her home, her anxiety was very high and it was impacting her quality of life. When – it was challenging also because we were trying to figure out ways to be creative to help her cope with this anxiety. At times Lita would create an unsafe space and this would cause staff to leave her when her anxiety was high and when she really needed the support the most. This type of support did not allow for the support worker and Lita to build a trusting relationship, made it very challenging for us to support her, and I was at a feeling of a roadblock of how to support her. Lita – I have now been wearing the watch for 1.5 years. I live semi-independently. My relationship with the staff is much better. They are able to help me early on. This has helped me trust them. Because I’m more accepting of their help, I call my parents far less and the conversations are more positive. In the future, I would like to monitor my own anxiety with the watch because one day I want to live independently on my own. Kaitlin – So, as Lita said she has now been in the pilot program for 1.5 years, and because of the watch, we’ve been able to build a relationship with Lita that is constantly growing. Lita’s staff team is able to notice a spike in anxiety and help her verbally or non-verbally help Lita, and then we can check in to see how Lita is coping from there and see what supports we can offer as an early intervention. Lita is able to work through her anxiety and she’s more accepting of those supports. Lita is more receptive to learning, developing, and using coping strategies that work best for her. Lita’s also able to have more meaningful conversations with her family. Adriana – Awesome. Thank you so much, Kaitlin and Lita, for sharing your perspectives and experiences to date with the technology from Awake Labs. As direct users, it is so so important for the group that is joining us today to hear from you. So very much appreciated joining the panelists today. So – good afternoon everyone. My name is Adriana McVicker, or otherwise known as ‘Addy’ for maybe some folks on the call. And I work in a management role with Community Living Windsor and also alongside Peter Marks from the Centre for Conscious Care. So firstly, to our friends at Awake Labs, many thanks again for having us join in for this meaningful webinar. And on behalf of Community Living Windsor and A Centre for Conscious Care, many thanks to Community Living Ontario for hosting such an important and also timely webinar. So just a little bit about Community Living Windsor – we offer support and services to about 650 people and families in Windsor to help them live a most optimal life. Which, not unlike many organizations who may be joining the call, we recognize that might look differently for each person and family. And so we do try our best to stay true to our grassroots beginning and creatively offer supports and services to meet individual needs, honouring their rights and responsibilities to live a life with opportunity, meaning, and purpose. And so to do that CLW offer seeks out different organizations for partnership and for cross-pollination of ideas to most optimally support not only the people and families we serve but also to enhance the growth and development and experience of our support staff. So one of our deep partnerships most recently has been with Peter Marks and the Centre for Conscious Care, which then led us to our continued partnership with Awake Labs. So very simply, the work A Centre for Conscious Care and the Conscious Care and Support Model looks to alleviate unmet needs that can cause expressions of anxiety, agitations, and aggression. And many of these unmet needs are far upstream from its manifested expression which causes us as supports to look more deeply and clearly at the root cause. As so through Peter, we met Paul and the crew from Awake Labs. And their technology is an incredible tool to help recognize an increase in physiological responses before any outward manifestations lending to the supporter a tool to be able to be present, tune into the situation, and possibly check in with the person whom they’re supporting to see how they’re feeling. And so this tool enables the supporters to provide support proactively and respond in a timely way to meet the needs of the person when they may be experiencing an elevation of anxiousness. So the Conscious Care and Support Model along with the innovative technology of Awake Labs has been incredibly meaningful for our employees to increase their confidence, resulting in a more optimal experience for the people we serve. So with that as a bit of an introductory, I’d like to pass the virtual mic over to my colleague, Erica Taylor, just to talk a little bit more deeply about some other experiences with Community Living Windsor. Erica – Thanks, Addy. Hello everyone. My name is Erica. I’m a Manager of Support at Community Living Windsor. So along with Addy, I want to thank everyone for this opportunity as well. And as Addy stated, we at Community Living Windsor do our best to offer optimal support to those we serve, focusing on each person’s personalized individual needs. So as a Manager, I’ve tried to work with people and their teams to focus on proactive ways to respond to each person’s support needs to help create a meaningful life someone wants to live and enhance the supporters experience with them while at work, creating both a more positive outlook on life for that person and a more positive work environment for our staff. Sometimes we figure out exactly what the person needs and how they need us to support them. Sometimes, after speaking to everyone in that person’s circle of family and friends and supporters, we get to a point where we know this person needs something else – something that we’re missing. So at that point when someone is struggling and we’ve exhausted all ideas, when we think we’ve tried everything, we often reach out to others for additional options – healthcare professionals, therapists, behaviorists, family networks, and independent facilitators. It’s been our experience that referrals for specialized services can take a while, upwards of years. Only if somebody is presenting serious challenges and greatly risking their own safety or the safety of their supporters, do they get bumped up to the top of the waiting lists. This is hard for those we support who may be greatly struggling internally and are unable to express this to us. They may not be showing anxieties or struggles externally to those points, but inside they’re in pain. When it comes to direct supports and when people are most anxious, often we’re put in a position to keep people safe by creating distance and isolating the supporter from the person supported. This seems counter-intuitive at times because for many, that’s often the time when someone is feeling unsafe needs people the most, not isolation. As employers and supporters, this can be our greatest hurdle. At no time are we willing to put anyone in harm’s way, but at the same time, we understand that these times are the most crucial in helping to alleviate some of the anxiety and prevent from reaching a tipping point. As an organization, we try to be most diligent to best figure out what can cause anxiety-provoking escalations. We look for antecedents and patterns, then we look to enhance our supports by avoiding those antecedents for more optimal outcomes to prevent agitation. As well, we want to prevent their supporters from getting hurt: lower those accident and injury reports, reduce workplace safety risks. And as much as we want optimal experiences for those we support, we also want that for our staff. We want to foster and build on those positive, trusting relationships between the two. Addy, just wondering if you could elaborate on the impact this technology has offered to us as an organization. Adriana – Yeah, sure. Thanks, Erica. And so, as we consider how Lita has described her experience and expressed how she sees what she wants her life to look like in the future, we’re doing what we can to support Lita to navigate a life of her choosing. So living with anxiety, less hospital visits, learn new skills and tools to help regulate her own emotions and gain more skills of independence with a bright future and a goal of living on her own. And so the pilot project with Awake Labs enabled Lita and her supporters to have access to a tool to help supporters not only learn how they can more optimally respond in a timely way but through that, as Kaitlin and Lita have highlighted, the timeliness of response encouraged stronger, more trusting relationships between Lita and her supporters, during times where she may have actually felt a bit uneasy. And as an organization, we have known the crew from Awake Labs now for just over three years, and have committed ourselves to helping fine-tune the technology to best meet the needs of those who may use it. And so the technology as it is presented today as Paul has shown was not the technology that was presented to us three years ago. And through feedback, Awake Labs has continually doctored its usability to make it an even more useful tool for supporters and family members. And so we’ve engaged in a second round of the pilot project to offer some additional continual quality improvement with the technology, and we’ve also onboarded three additional participants and teams. And so the reports from the teams so far have been incredibly positive, and a common theme that’s been expressed is that supporters feel that they can intervene with the skills that they know in a more timely way. And so supporters have also shared they’ve been able to discover patterns that are associated with heightened physiological responses that they didn’t even realize were patterns. And they, also shared by Lita’s supporter, Kaitlin, are then able to explore how they can modify their approach, to better accommodate the patterns or to alleviate any unnecessary episodes of anxiousness. And so Erica, as a manager of support, just wondering if maybe you could speak to the impact of the technology when you’re managing teams and the increased capacity that building more of a consistent approach to how can support can be offered. Erica – Sure, thanks, Addy. So as a Manager of Support, it’s very apparent that the importance of being a cohesive team with open communication is key to everyone’s success. To provide that optimal support and optimal experiences that work, the whole team must be given opportunities to experience successes and failures without judgment, to see what some out-of-the-box supports can do for somebody and to see what works and what doesn’t. As managers and leaders, we need to ensure we foster these gains to allow people to work through these new ways of supporting without repercussions. We need to make sure that teams know that we’re there to support them as well through change and uncertainty. We’re there to help them and learn with them. This technology, along with other supports, has created an opportunity for teams to see what positive change can come from working together, from introducing new ideas and working hard together to learn new ways of offering new support. For Lita and her team, among others, this technology has built their trust with one another, built their confidence. Both the person supported and the supported become better equipped to respond to anxieties. Their skills of recognizing their emotions and their abilities to regulate them grow. Everyone has the opportunity to grow and learn from this. It helps to expand people’s knowledge of how anxiety manifests and builds. It increases people’s empathy towards those who suffer from anxiety. This change in perspective leads to better mental health for everyone involved. And this technology can have an impact on an organization on a large scale. For everyone needing support, consistency helps create a sense of calm. So when someone has a team of 10-15 different supporters, some of those supporters can be newly on board as well, having something to help each one of those supporters provide support, in the same way, can greatly increase that person’s sense of trust and calm. To know that every person helping them will respond in the same way, can prevent rising anxiety. This technology can provide that. It’s a tool that each supporter has that gives them the head’s up and a reminder as to how to respond. It’s a way to collect data in a timely manner, which helps us discover those antecedents and patterns we sometimes have such a hard time figuring out. So I would like to pass the mic on now to a fellow panelist, Kayla from CLASS. Kayla – Thanks, Erica. So CLASS has been involved with Awake Labs for about a year and a half now. And we have four people we support who have been wearing the watch. We are a bit of a rural agency, so we’ve had some technical issues. So we have one person not wearing it right now because the WiFi is not working in the house. We’ve got one person that is away getting treatment elsewhere right now. So we have two people consistently wearing it at this point in time. And we chose the four people that are participating. We got together and identified who we were really struggling to provide the best support to. And the four gentlemen that happen to be wearing it right now, there was a lot of anxiety and a lot of aggressive incidents. So we were seeing lots of staff injuries as well, which then put us, as Kaitlin so nicely put it, with some roadblocks to support because staff were either afraid to approach that person. The person didn’t trust them when they were saying, “can we help you?”. So that was really a challenge we were facing. And so these for four people, we were saying, “let’s see if this can make a difference.” What we’ve seen is that staff are now able to respond so much sooner and more effectively to these four gentlemen’s levels of anxiety as it comes up. And that’s resulted in an increase in trust and rapport-building. So some of the gentlemen are much more accepting of offers of support, and even the man who, right now they don’t have WiFi so he’s not wearing the watch, staff are now better able to identify some of his early early signs and respond sooner, even without the notifications, which has been really great. Because he trusts that when they come and approach him, it’s because they’re there to help him. And there’s less barriers there. And we’ve also had someone who has had some success in recognizing their own anxiety and asking for help that way, which has been great. We have seen a marked decrease in aggressive incidents for two of the people that are wearing the watch. We’ve seen some decrease for the others, and we’re working through some of the other challenges for them as well. Some of the people, as I’m sure many of the attendees know, there can be some very complex people that we’re supporting, as so as we can use this technology, it’s been so amazing to integrate that into their behaviour plans and response strategies to see that decrease and that change. And an increase in confidence, not only with the staff but the people wearing it as well. So as I said earlier, as a Behaviour Analyst, I’m always looking for what we can observe and what we can see, measure. And what I’m always trying to do is look for trends or antecedents, those things that happen before a challenging behaviour that are a common theme for that person. So we can adjust our supports to work around those triggers. So things that we identified – and some of them we already knew but this really confirmed it for us and helped us develop better supports for them – shift change has been a really difficult time for lots of people. Same thing with sometimes visiting your family is very exciting but can also be very stressful sometimes. Large events or even doctor’s appointments can cause a lot of anxiety for people, so just being able to track changes in their anxiety levels leading up to those things, has really helped to improve our support. And as we make changes to programming, we can also see if those changes have been effective, because we can use some of that measure to see if anxiety is decreasing. The other thing that was really important to us is to be able to use some of this information for staff training so we can identify some more critical decision-making points for them in terms of how they’re responding. And while we’re doing that after the fact, we can then apply it to future incidents and future support. We’ve also really been able to expand our knowledge of how anxiety is working for these four gentlemen and what is going to work best for them on an individualized basis. We do share a lot of the information with the psychiatrists or other members of the treatment team that we work with, and they’ve been very receptive to it and have really loved having that feedback. And we share that as part of a package, so we include information from families and information from the person supported and staff, as well as other data that we’ve been collecting. And having that extra piece of knowing what the anxiety looks like in the moment has been really helpful in making treatment decisions going forwards. So our experience with Awake Labs has been absolutely incredible. And that they’ve even chosen to include me in this webinar is so exciting. And to have got to have worked with these incredible panelists has been really good. Awake Labs has been so responsive and supportive to all of our – or, sometimes, my – many many requests and feedback. And I genuinely feel that using this technology has changed the lives of the four people that have been using it. Kathleen – Ok. So now that we have some of those darker days behind us, I’ll continue with our experience. Today, David has a Microboard, which is an incorporated circle of people who know and care about him. One way this support shows up is the commitment to seek community first to meet David’s needs. It is through this philosophy that we met Peter Marks from A Centre for Conscious Care. We were on a path to addressing David’s unmet needs. It’s where we first became convinced that David was living with anxiety. It was while on this path that we were introduced to Awake Labs. We were discovering that anxiety may be at the core of David’s unmet needs. We sought out Paul and Andrea who happened to be at a conference that we were attending. We learned of the pilot project for Awake Labs and the wearable technology. After a couple of conversations, there were some things we needed to consider. First, we needed to partner with a local agency. That meant that three other people could try out this technology along with David. Next, we focused on what this technology would mean for David. He has many sensitivities, and WiFi is one of them. Hats, jewelry, pretty much any accessory, David would not wear. But we had to believe that he would be able to wear the watch. Paul and Andrea met David in our home and worked with us to help David be successful. David put the watch on and it was a non-issue in terms of it being an annoyance for him. I think he liked the attention that it brought. Paul and Andrea walked us through the technology, activated the app, and the iPod to achieve a baseline of David’s biorhythms. A few hours went by and there was not a single chime from David’s iPod that alerted us to an anxiety spike. Our learning had begun. We determined a baseline for David whilst he was in the midst of fight, flight, or freeze. David was, in fact, frozen with anxiety while we set up the watch. That was new information for us. The iPod did not chime because we got a baseline at a very high anxiety level. Once that was adjusted we began approaching new activities, gingerly at first. We were all a little thin-skinned from years of failed attempts. We all had to be brave, not just David. We listening for chimes and placing our comments around what we were learning as early signs of anxiety. If there was a spike, we would provide intervention and give him the option to leave. As we practiced this strategy, David’s confidence grew and we began taking more and more risks in the community and with activities. He began walking through his art exhibits, attending local outdoor markets and festivals. The technology resulted in David having better support in real-time happenings. He began meeting people that had been in his invisible community for many years. He was now introduced to people and shaking their hands or giving a nod and eye contact. Finally, David could make his exits with dignity. Life at college became a better learning place. He attended his first Microboard meeting one year after incorporation. And we hosted our first family dinner after many years in September of 2019. It was my birthday. We had only been using the technology for a few months so agreeing to host the dinner was a bold move. We knew we would be relying on the technology fairly heavily. We were feeling brave enough to take the change. The technology did not let David down. David stayed in the room with all of us. His dad and I, his sisters and his brothers-in-law, and 5 nieces and nephews. We had dinner and conversation and laughter. David was sitting with his dad, who was keeping watch of the iPod. Sure enough, there was a spike in anxiety, straight up to high. Outwardly, David appeared calm. He was sitting still and quiet. But inside, he was screaming with anxiety, yet outwardly frozen. Immediately, we asked the children to go downstairs and continue their play and two adults left the room to assist the children. David remained quiet and seated. There was no outburst. There was no self-harm. Just quiet. The intervention took about 20 seconds to complete and in that short space of time, David’s anxiety returned to normal, David’s dignity intact. In total, the party lasted for 5 hours. It was a huge success, and one our family had waited years to have. Moving forward, David continues to live with his technology. We have all gained confidence and David’s celebrates in his community and contributions. The technology is not perfect, but it has certainly changed David’s life. He continues to teach us about his anxiety and we learn and evolve. When David shows sensitivity to the WiFi, we simply remove the watch for a short period of time. He is always eager to put the watch back on. Paul – Thank you, Kathleen. Thanks for sharing that story and I want to say a huge thank you to everyone who is attending the panel, or the webinar today. Everyone who is in the audience. For all panelists, Lita and Kaitlin, Addy and Erica, Kayla, Kathleen, the team at Community Living Ontario, we really really appreciate all the work that you’ve been doing with us and everything that went into making today possible. Before we open the floor for questions, I just want to share with you how you can access our technology today. And a slide with our contact information will be left on the screen for you while we’re answering your questions in a couple of seconds. If you want to get access to the technology today, here’s how you do it. If you’re a family caregiver, you can go to our website, which is awakelabs.com, and click on the button that says, “Sign up today!”. Now when you click, “Sign up today!”, we’ll take you to a page that will ask you for payment information. Now please note that we do have to finalize the details of an agreement with Holland Bloorview before we’re able to process your order, but that means that you won’t be charged until everything is ready to go. After you’ve submitted that information, I will schedule a phone call with you just to confirm a couple of technical requirements, such as a reliable internet connection. And when everything is confirmed, we’ll able to ship your order, again, after the agreement has been signed. So, and once again, please note we won’t actually charge anything until everything has been confirmed. We are offering the technology at a special discount price for families during the pandemic. The total cost, including HST, is $998.91 CAD. So that’s inclusive of HST. And this full cost is all covered under Passport Funding if you live in Ontario. And the price includes a Samsung Galaxy watch, like the one that I’m wearing here, 1-year subscription to the application, and support from our team during that time. And if you are a professional caregiver, or if you represent a Community Living agency or another similar type of agency, and you would like to use the technology for more than one of the people that you support, then please send me an email directly at paul@awakelabs.com. And once we’ve had a chance to connect over email, that’s when we’ll schedule a call, we’ll discuss the next steps, and be ready to get started at your agency. So once again, thanks to everyone and I would remiss if I said thanks again to the panelists, the attendees, Holland Bloorview as well who is instrumental in the development of this technology, and I’ll turn it over to Heather at this point who is going to be managing the Q&A part of this presentation. Q&A period: Heather – Hi – Great, thank you so much, everyone. I really appreciated hearing more about the technology and learning myself today. It was very informative. And I have a bunch of questions myself, but I’m actually going to take a look at the panelists here first and see what we might start with. One of the questions, Paul, and I’m sorry if you did answer this but maybe you can answer it again, was – can multiple people have the app tracking the same watch? Paul – That’s a great question. Right now, the way that it’s set up is one watch talks to one mobile device. But it is possible to extend that access to more than one mobile device. That’s not available today but it’s certainly something that we’ve heard from people and that we’re working to build. So, to wrap that up – it’s currently not in the state that exists today but it’s something that we can accommodate in the future. Heather – And the next question is kind of related – a little bit about the watch again. I think Debbie is asking here – any chance of one for the Apple watch? I guess there’s some Apple watch users out there wanting to know! Paul – Yeah. Yeah – no that’s another question that we get quite a bit. Yes, it is something that we want to accommodate. Again, unfortunately, right now it’s just for the Samsung Watch, but we do recognize there’s a lot of different types of wearables out there and we do want to work to expanding access to more than just the Samsung Watch. Yeah, unfortunately, it’s not something that we have today, but we know that it’s something that a lot of people are looking for so it’s something that we want to work towards as well. Heather – Ok. Another great question here is how much is the ongoing subscription? Paul – For sure, yeah. That’s a great question. So, right, the special discount price right now is that, inclusive of the 1-year subscription, and if you want to subscribe for an additional year afterward, it’s priced right now at $516 for a year. So that’s broken down to about $43 a month. That would be the price for families moving forward. Heather – Thank you. Now, this is a question that I don’t quite understand myself but it’s a good one to ask then because maybe the others don’t either. Are you working towards having the technology work with data as opposed to WiFi? Paul – Yeah! Yeah yeah yeah. Great question. Yes. Short answer, yes. There are some models of the Samsung watch that can connect over – over data. I have a model of it at home and I have yet to connect it to my data plan, but it is something that we’re actively testing right now. So that is something that we’re working towards as well. Heather – OK, great. And of course, I’m going to run through some more that I’m seeing here. But please if your question doesn’t answered, I should clarify that we will ensure that we send out a communication covering off everything that you need. And Paul has shared his email as well. But let me just keep going here. When I look here – what about people, Paul, who may have sensitivities to wearing items or having things on? Have you looked at that? Has sensory sensitivity been considered? Paul – Yeah. I’m happy to answer a part of that question and if any of the other panelists want to address it, you’re welcome to. For us, yeah we’ve definitely worked with people over the last little bit who have some sensitivities to certain materials. One of the things that we’ve done is, because the Samsung Watch is like a commercially available device, there’s different bands that you can purchase made of different materials. So that has helped. So I’m wearing one right now that’s like a rubber-type of material but there’s Velcro, I mean… anyways, so. Part of what we’ve done is – people have access to different kinds of bands with different kinds of material. And I apologize if there’s noise in the background. Someone has decided to start cutting the grass outside my window. So I’m going to move in a sec and as for other sensitivities, I think with a couple of people, before we actually got started with wearing the watch itself, I think we – with the agencies we worked together and found like cheap, or those plastic silicone bands, or something like the watch so people can get used to wearing something before actually trying to wear the watch and see if that is something they could tolerate. So there’s a number of different strategies that we’ve used but if – sorry – if any of the other panelists want to take over while I just move in a less-noisy area, and talk about some of the things that we’ve done to address those questions. our goal is really to help people better understand and manage their stress so they can spend more time enjoying their life.[overlapping responses] Kathleen – I would like to address some of that, because David has a lot of sensitivities and it runs like a river for him. So sometimes he’s sensitive to something and sometimes he isn’t. So we are always checking in with his comfortable-ness. We use the rubber watch band. That seems, he seems to like that one the best. But we also use the – um, right now you can’t get the technology wet. So we use that as a strength. And if David is really insisting on, or really being bothered by the WiFi or the watch, we just find creative ways to remove it. And we do tasks in the kitchen or tasks with water, or other things where it’s off of his wrist for, you know, 10-15 minutes at a time. And then he’s always eager to just put it right back on. So we’re just always checking in with him to make sure because of his sensitivities. Heather – Ok thank you. That’s very helpful. This question maybe for the agencies participating. How do you make sure that the choices of the person wearing the watch are respected? What if the person who has an intellectual disability doesn’t want to wear the watch? I know Kathleen’s had a fortunate circumstance where David, once it was on he actually didn’t mind it at all. But what if they do? And so what are some strategies that you’ve put in play? Kayla – Addy – do you… you look like you want to say something. Erica – I was waiting. I thought she was going to. I can speak to that and, Addy, if you want to add on. So, I mean, we do everything possible to make sure that we – it is the person’s choice whether or not they want to wear this watch or, you know, go out one day or stay home. Whatever the case may be. So what we’ve done from the beginning when we partnered with Awake Labs is we will meet with the person. We will meet with their families, their support teams. Just to make sure we’re asking them if they would like to wear it, if they’d like to try this out, see if works for them, see if it doesn’t. There’s been many people we support who flat out said ‘no’ right away, and it’s like, ok you don’t wanna try it out. There were some people we support who tried it out for a couple days and then said, “you know what – I don’t like it. I don’t want to wear the watch.” So, that was that. So really it’s just making sure that we’re paying attention to what they want. We’re asking them if they want to do it. If they can verbally say, ‘yes’ or ‘no’ to us, then we’re going to listen to what they say. If there’s someone who may not be able to verbalize it to us, we’re really looking to their teams and their families to, you know, look for the ways that that person does say ‘yes’ or ‘no’. And listen to what they say. Addy, did you want to add anything? Adriana – Yeah sure. I think a big thing around consent is, you know, recognizing implied consent. So if someone has put on the watch and has continued to wear it, that’s great. That’s implied that this is OK. I think that one of the things as well, and it’s not unlike introducing something new to some folks who just struggle generally with something new in their life, so there might be an introduction, but then there’s a bit of a balance between consistency and persistency of when we offer the new technology. So we really strongly encouraged with the supporters or family members, that if the person typically is very aversive right out of the gate, but we know that maybe after just really knowing them well, that maybe after a solid week or two, we’ll stay persistent, kindly recognizing boundaries, but knowing that’s may be the way they operate welcoming new things in their life. So just very, summing up, to add on to your point, it’s just really knowing folks well, of what works for them. And then as supporters, we’re open and recognizing their implied consent when they’ve offered it. Heather – Ok, great! Just a question now, I can’t believe we’ve gotten this far into the webinar without saying the word ‘pandemic’, but I am going to go there. (laughs) Have people been using the technology differently because of the pandemic? Have there been different benefits, maybe Kathleen or Lita, or someone would like to respond to that? Kathleen – So we’ve – the pandemic just provided opportunity to teach us new information about Dave. So we haven’t noticed that Dave has really struggled with more anxiety, other than the first couple of weeks when life first began to change. So what we are seeing now is not an awful lot of anxiety, but there are some outbursts that aren’t registering as anxiety. So where he’s very loudly telling us he wants parts of his life back but he’s not anxious about it. So yes, we are still maybe dealing with behaviours or the way he is able to communicate in his limited way, but always learning. Always learning about his anxiety and what’s not anxiety. Heather – Thank you. So one of the questions I see come up here, Paul, perhaps maybe you can expand on this. Will you be expanding the duration that you can go back to look at the data? Someone is asking potentially a month, instead of two days? Paul – Yep. So, what’s available on the iPod right now – just to review through the application, it is just one hour and the ‘two days ago’. But Kayla might be able to explain this a little bit more as well… There is a way to access information from a lot longer than that. Essentially from the time that someone starts wearing the watch. And we can compile that information and share it with people. So that’s not something that is integrated on the app right now. But depending on the kind of feedback that we get, if that’s something that’s useful to have then it’s definitely something that we can consider building. In fact, we’re on our way to providing a tool like that to agencies that we’ve been working with specifically. So, short answer is – yes, we’re 100% open to considering it. It’s a matter of integrating within the application in a way that’s useful to who’s going to be using it. But maybe, yeah, Kayla, if you want to talk a little bit about that and the data that we’ve been sharing with you as well? Kayla – Yeah, sure. It’s actually a really great question. I have been bugging Paul about this for ages now. And just saying it would be really great for me, instead of sending him an email and saying, “hey, I was hoping you could, you know, compile some graphs for me from this date, this date, this date, and this date. For me to be able to look back myself. So it’s a great question. Paul has been so good about taking in my emails and he’s very quick too about getting back that information. And we’ve been able to use it to, kind of over lay incidents and look at what actually happened here so we can learn from it. So Paul has been promising me a dashboard for a little while. It’s – I mean, it right now the two days have been really helpful for our frontline staff, for sure. For me, as a part of the clinical team, it’s great for me to be able to, I mean, right now I can’t go into the homes to go see that two-day summary. But when I’m there, that’s really helpful as well, to be able to look back. But yeah, a month… a month is coming, right, Paul? [multiple panelists laugh] Paul – Yes, we’re working on it actively. Heather – Ok, I have a question here, I see in the panel – any restrictions to the type of mobile device that the app can be installed on? Paul – Mhmm. So the app that agencies have been using right now is on iOS. And the Android version is something that is coming very soon. I could – so right now, it has been used only on iOS but the Android is something that is coming up. And by the time that everything is figured out and we’re able to process orders, the Android app should be available. So as far as the types of devices, for the agencies, we’ve actually supplied with iPods. That’s the device that they use to look at the app. I have my installed on my iPhone. We’ll do some testing with iPads as well, because that’s something we know a lot of people are using. So I guess that’s the state right now. Heather – Ok great. We’ll probably just do a couple more questions, Paul. Actually this one’s for me. Paul – Great! Heather – So, does Community Living get approached often about testing technologies, and if so, what made you decide to partner with Awake Labs? So we do not get – Community Living Ontario, at least, does not get approached often. I think a couple of times in my tenure. I’ve been there five years. So we don’t get approached often but what really appealed to us about Awake Labs was the experience with our member agencies and the positive results and experiences that people supported have seen and caregivers have shared with us. As you can see from the webinar today, it really helped us in working with them to become a strategic partner. So we really talked to people who have worked with Paul, the Co-founder, along with Andrea. So, and understood that they share similar vision and values to our organization and really wanted to help people being supported in a way that made their lives less stressful and more enjoyable. So that’s the long answer there. People, feel free to reach out if you have other technology ideas. We are open to hearing about them! I think one of the final questions, maybe before we start to wrap up – I’m just having a look here. Do you have any advice, either as an agency or as a family, on how to make sure the technology is being used properly? Who would like to jump in there? Kayla – I can, just to start, and then maybe Erica and Addy or even Kathleen may want to add something. When we first put it in, we had some barriers in terms of staff buy-in. So that’s one thing that we definitely recommend spending that time before you’re actually – have someone wearing the watch and people are using it. Make – supporting staff, training them, showing them how that technology works. Once we were able to show, like, you get this notification and respond, and we’re not seeing that escalation… we saw more buy-in from our staff. And then more success as a result. So, for us it was really that, if we could go back and do it all over again, for sure it would involve the front line staff from the team right from the beginning when we were making the decision to even out that technology in place within the home.

And then, just in terms of, the people supported – I mean, Awake Labs has been so person-centered through all of this in making sure that people are comfortable with the technology, that they want to continue to use it, and that they’re getting the support that they need. So even involving the person supported from that very beginning. Getting the full buy in from the whole team right from the start would be really beneficial for use. Kathleen – Yeah, and as new people come on to Dave’s team, that’s all sort of managed by his family and his Microboard, this is presented to them as, “this is one of the tools that helps support Dave and gives information that you’re going to want to know. So we’ve just… it’s a non-negotiable in our household. If you’re working with David, then you get comfortable with the technology. Heather – Ok great, thank you. I have a couple more questions in the panel. Will this device work for someone with seizures? Paul – Yeah, that’s an excellent question. So, I believe there are people we work with in other agencies who have seizures and they’ve worn – uh, participated in a pilot that we’ve run at a different agency. And it was used with some degree of success with the team, but we haven’t done as much deep investigation to understand what the impact of seizures are in terms of how things are being captured in the application. So it’s an excellent question and one that merits more research, honestly.

So, yeah, I mean that’s as far as I can answer right now. Windsor, or CLASS, if there’s anyone else that you’re thinking of who – yeah, if you’ve come across that case as well. But on our end, I know that there needs to be more investigation to understand really what the impact of a seizure might be on a person while wearing a watch. Heather – That’s understandable. I have another quick question – does it monitor sleep patterns if it is worn to bed? Paul – So, there’s not like a sleep-tracking function to understand whether or not someone is like, having a good quality sleep or not. Not in the same way as something like a FitBit claims to do. But some people who are participating in the pilots have worn it during the night because the teams are interested in understanding if the person is experiencing some amount of strong emotion or stress while they’re in bed, or because people have a – those particular people might have a habit of getting up in the middle of the night. Those are times that are difficult for them.

So, no it does not monitor sleep patterns specifically like quality of your sleep or REM cycles. But people have worn it to bed if they choose to.

When we meet someone and set up the device with them, usually what we’ll recommend is that someone take it off and actually use that time to charge it. Because (1) it usually establishes some sort of routine and it makes sure that the watch is charged and ready to go the next day, and also because, you know, our own team has tried it while sleeping and we don’t find it particularly comfortable and so we just make that known that it may not be the most comfortable thing to wear while in bed. Heather – Ok I see one question here. I think what we’ll do, Paul, is finish up with this question and then if there’s anything in the panel that we see coming in that we weren’t able to answer today, we’ll follow up, as I had mentioned before. But, before we let everyone go, maybe we’ll do one more.

Is it available to children to use as well? So I guess is there an age factor in the technology and using this device? Paul – That’s a question that…. It’s a good question and a question we get a lot. The size of the watch itself is something that is restrictive for kids, or someone who is quite small. It’s a big watch. It’s a bulky watch. And it needs to be worn fairly snug on someone’s wrist in order for the readings to pick up accurately. So a big part of the restriction for age, I mean we work with adults, I think as young as 19 and all the way up to senior years. A big part of that reason is because of the size of the watch itself, and because the people that we’ve partnered with support adults. We recognize that, you know, anxiety, is not something that is limited to adults. It’s something that kids, that youth experience. We’re always looking for wearable solutions that are more appropriate for kids and that we can start investigating how to, essentially, implement this technology for younger kids. But right now the focus is really on providing this technology for adults.

So age range, I would say, I mean, 18+. Or maybe 16, depending on if someone is of a size to support wearing this watch. Heather – Ok, great! I think even though we’re a little early, we’ll wrap up there today. The panelists have been so patient. Everyone has been. It’s been a wonderful and very informative webinar. I cannot thank all of you enough for today and sharing everything with us. And for sharing your stories, Lita and Kathleen. Very much appreciated. And, like I mentioned, you should all receive the recording and we’ll attempt to do a follow up of any of the questions that we missed today during the webinar. Thank you, everyone. Thank you, Paul. Have a wonderful day.

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