Reducing barriers to inclusion using wearable technology

Full webinar video here:

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.

 

 


How Community Living Toronto provides support during the COVID-19 pandemic

Jump to the Call to Action below to see what you can do today to help people who have an intellectual disability during the COVID-19 pandemic.

The public’s attention is focused - rightfully - on supporting hospitals, nurses, doctors, and other front line health care workers. But we forget that there are other people out there who are working hard in our communities to make sure that people with intellectual disabilities are not forgotten.

I don’t think the lack of attention to our sector has been intentional; but it makes me sad. It makes me want to go out there and shout ‘Hey! There are people out here who need support and they’re being left behind!’

- Sylvie Labrosse, Fundraising Manager at Community Living Toronto

 

Today, many people who have an intellectual disability live in ordinary houses and apartments, some with family members, others independently or with roommates. This is due in large part to the Community Living movement, which has been growing since the 1960s. Because of their tireless advocacy, we are seeing more and more people who have an intellectual disability as active participants in the community of their choice. 

For some people, their community includes professional caregivers who provide support for activities of daily living. Through Community Living agencies, people who have an intellectual disability can receive essential services like day programs to learn new skills, employment readiness services, or residential supports. 

Organizations like Community Living Toronto (CLTO) help to build inclusive and welcoming communities where people can live healthy and happy lives.  

 

Now, current social distancing rules to slow the spread of COVID-19 are hitting these communities hard. Day programs have been closed. Gathering places are locked up. Direct support is limited in order to reduce the risk of transmission. And it is all taking a toll. 

The social aspect of the day programs is a huge part of many people’s lives and missing that opportunity has been difficult.

- Day program staff (J), CLTO

The lockdown of the city is a real challenge for the people we support. Getting people out in the community, having them participate in programs, jobs, and volunteer placements… all those types of activities, that’s what we’re about as an organization. 

We have a clubhouse in our CLTO downtown office. People we support can come in to play pool with their friends, watch some TV, get a snack. That clubhouse is a real benefit, it’s like a village. But it’s not available anymore. And it can be really difficult for some people we support to understand why they can’t come to the clubhouse to see their friends.

- Sylvie Labrosse

Social isolation can be a real challenge, and there are factors that heighten the health risks faced by this population during the pandemic. Many people who have an intellectual disability live in close proximity to each other. In group homes and other residential settings there may be limited personal space, and direct contact with multiple people on a daily basis. People who have an intellectual disability face higher odds of developing a severe illness from the virus. We also know that they have higher rates of mental health challenges at the best of times. These challenges will be exacerbated by the ongoing pandemic.

People who provide support - Direct Support Professionals (DSPs) - are not recognized as health care workers. When the pandemic first hit, they did not automatically get priority testing for COVID-19, nor did they have ready access to the PPE supply chain.

This has had an impact on people with intellectual disabilities who rely on these professionals. DSPs assist with activities of daily living like cooking, grocery shopping, budgeting or personal hygiene. DSPs also administer medication and accompany the people they support to appointments. In short, Direct Support Professionals are indispensable. 

During this pandemic, DSPs continue to show up for the people they support. Their commitment speaks volume. The resilience and creativity shown by DSPs and people who have an intellectual disability is a hallmark of how this community weathers difficult challenges. 

Self-advocates are replacing their weekly get togethers with Zoom meetings. Some have a cell phone or a laptop so they can stay in touch with their friends and families. They’ve also been really good at finding creative ways to “go out in the community”, like doing a virtual ROM visit from their living room, or a Netflix party…

For example, Sam is staying in touch with his friends by calling them and playing games online just like other people his age. Jenny left her apartment to go back home with her family. She celebrated her birthday by organizing to have her favourite food brought in and had a virtual dance party. 

- Sylvie Labrosse

Agencies have also had to get creative in order to continue providing optimal support. Constant communication across organizations and collaboration between agencies is the new normal. In a webinar hosted by Community Living Ontario, Jo-Anne Dermick of Community Living Parry Sound shared how they have adopted ‘decision making trees’ to guide employees through different COVID-19 related scenarios. These documents were first written and shared by Christian Horizons, another agency providing support to people with intellectual disabilities.  

At Community Living Toronto, managers and supervisors are helping their teams stay calm and resourceful. The corporate team is making sure that people are getting what they need and that front line workers are being recognized for their work. 

It’s important to show that we have not forgotten anyone. We need to show that we care about them. People are used to interacting with each other and we have to keep those connections going. 

Staff have gone over and above to provide for activities including cooking, crafts, etc. it has been working well. We’re still working with the regular structure of the homes, but challenging ourselves to not be overly routinized…

- Day Program Staff (J), CLTO

Despite the efforts of the community, pressing challenges still exist, such as ready access to technology. Some people who have an intellectual disability have reliable access to the internet and mobile devices, but this is not the case for everyone. 

I have tried to do FaceTime calls to individuals who have the technology, but sadly this is something that is really lacking in most of the individuals we support.  Not having the proper devices or access to the internet has proven to be a big obstacle in this crisis.  Phone conversations and social distancing are difficult for some individuals to manage as the only support that we can offer, and it could be helpful if that were able to use some of the technologies that others use to communicate.

- Adult Protective Services staff, JC, CLTO

In extreme cases, the close living conditions and co-occurring health challenges may result in a crisis. At Participation House in Markham, 37 out of 42 residents and 12 staff members tested positive for COVID-19. At the time of this writing, six people supported at Participation House have died from the virus, including Martin Frogley,  Patricia “Patty” Baird, and Raymond Johnston. The facility is extremely short staffed, prompting an urgent call for volunteers. Former MP, President of the Treasury Board and federal Health Minister Dr. Jane Philpott is among those volunteering at Participation House. 

Canadians are starting to become aware of the fact that some people who have an intellectual disability require the same level of attention we provide to hospitals, long term care facilities and senior homes. This is the time for all of us to double down on our support for this community. Without it, people who have an intellectual disability will continue to suffer disproportionately during this pandemic. 

In an article posted on LinkedIn by Open Future Learning, Mike Bonikowsky, a Direct Support Professional who supports 5 men in Ontario, writes about the questions he is asked each morning … 

“Can we go out today? When can we go out again? Why can’t we? Is it just us?”

“Is it just us?” They are used to the expectation of exclusion - that these rules which are meant to keep people apart only apply to them. Let’s come together and show that we are here for them!

 

Call to action!

Let’s show that Canadians with an intellectual disability will not be left behind. Here are some simple actions you can take to support this community right now:

  1. Cash donations to your local Community Living organization will help cover the cost of PPE, personal hygiene products, and other necessary expenses
  2. Do you have an extra tablet, laptop, or smartphone? Technology donations of any kind will help keep people connected to their friends and families. Contact your local Community Living organization with your offer. 
  3. To show appreciation for DSPs and other caregivers, you can also donate wellness products like lotions, granola bars, subscriptions to wellness & meditation apps, candles, etc. Staff & people with intellectual disabilities benefit greatly from a little pampering during these tough times.
  4. If you see or hear of someone who wants to donate PPE tell them to send it to organizations who support people with intellectual disabilities
  5. Write to, tweet at, email, call, wave across the street at your MP & MPP to demand that Direct Support Professionals be designated as essential healthcare workers.

 


Family Engagement and Care Coordination Key to Positive Outcomes

Dr. Amanda Kelly, BCBA-D lives and breathes family engagement in therapy.

As the Director of Home-Based Services at Firefly Autism Services, Dr. Kelly focuses her efforts on supporting learners and families, and she is an expert in care coordination. We are grateful to have had the opportunity to talk with Dr. Kelly, and we are happy to share her expertise with you in this exclusive blog post.

We hope you enjoy it! Read to the end to find out how you can get in touch with Firefly Autism Services and Awake Labs.

Are there strategies that your therapists use to encourage families to participate in therapy?

We very much believe in leading by example. Our team of BCBAs and RBTs work closely with families, and we request that parents and caregivers are physically present during our sessions. Together, we ensure the professional relationship is one built on trust. Showing a family how they can get to a result they desire is the best way to gain trust. It is our responsibility to demonstrate effectiveness with our treatment. When we can do that in the presence of the family, the engagement we seek comes naturally.

What are some signs that a family is engaged in your therapy?

Productive family engagement in therapy can look very different from family to family. Individualizing all elements of therapy is a core feature of ABA, from the interventions themselves to the consideration of specific family dynamics. For the most part, physical presence in sessions and involvement in treatment is the ideal scenario. Other signs of productive family engagement can include:

  • Willingness to collaborate on interventions
  • Taking data outside of session times
  • Being open to training and feedback on the implementation of a behavior plan

On the other hand if a family has never been given the opportunity to collaborate or have their opinion heard, this will amount to less than satisfactory outcomes for all involved.

Can you share your thoughts on what could happen if a family is not given the opportunity to collaborate and share their opinion?

It is essential for us behavior analysts to understand what the family and the person we support really value for optimal quality of life. We need to ask “what is the most important thing for this family”? If we make assumptions about what is important for any family, we run the risk of projecting what we want for them, not what they really want.

When this happens, the BCBA might ask that the family implement a strategy that addresses what the BCBA wants. The family might not be as invested in that case. They will be less likely to truly engage with the treatment recommendations. However, when the end goal of therapy reflects what the family wants, they will be much more likely to consistently implement our recommended interventions.

The other essential piece is understanding what is possible for the family. In a 2019 document clarifying ABA treatment of Autism Spectrum Disorder, the Behavior Analysis Certification Board (BACB) and the Association for Professional Behavior Analysts (APBA) stated:

“For some families, the time and effort that can be devoted to acquiring skills to implement ABA procedures is constrained by … the number of parents in the household, parental employment outside the home …, the needs of siblings and other family members, language differences, and financial and other resources.” 

It is our responsibility to give families the opportunity to share their challenges. We must consider the variables that may pose a barrier to family engagement, and make sure that we are designing our programs in a way that both the person we support and their family can be successful.

Why is collaboration and coordination of care across disciplines so important?

There are lots of people involved from diagnosis across treatment and education. Pediatricians, psychiatrists, psychologists, speech and language pathologists, occupational therapists, applied behavior analysts, and education/special education teams may all have a part to play in the care of an individual and their family. Each discipline has a unique and valuable approach and perspective.

Collaboration and coordination of care across disciplines is important because it will exponentially improve the chances of meaningful learning and progress. Giving the opportunity for teams to share information and opinions will ensure the best possible chance of generalization and maintenance of skills.

What does true care coordination look like?

From the perspective of a behavior analyst, true coordination means connecting and working together with each of the other providers in a flexible and dynamic way. It means we all work towards a common goal – meaningful independence and adaptive functioning for the person we support. True coordination allows for skills to be taught as a team, and generalized across all settings, situations, and individuals in that person’s life.

Imagine this scenario: A BCBA has developed a protocol that can teach a learner some alternative communication skills. However, the BCBA did not communicate the protocol with the learner’s school, or with the learner’s speech therapist. As a result, the BCBA, the school, and the speech therapist end up working on contradicting communication goals. This means that progress is slow, because there are too many goals with too varied a focus.

Now, if collaboration was a priority, the BCBA, the speech therapist, the school, and the family would discuss and work together to focus on the same communication goal. During this discussion, the BCBA and speech therapist find out that the school wants to use an intervention that will be minimally disruptive to the class. So, they collaborate to come up with an intervention strategy that is minimally disruptive. The family also learns this strategy and implements it at home. Now, the BCBA, speech therapist, school team, and family are all using the same intervention strategy to work towards the same communication goal. Progress accelerates and the whole team benefits as a result.

From your perspective as a BCBA, what concrete steps need to be taken for care coordination to be a reality?

At the start of the process, it is essential to identify what the person being supported and their family really value for optimal quality of life. Once this is achieved, reaching out to the other professionals working with the family is the next step. Observing the person we support in all of the different contexts and environments in which they live is extremely valuable. Creating relationships for the purpose of a common goal is essential for coordination of care to be possible.

There is also the necessary consideration of what is the most important thing that other professionals are addressing. For example, if I am insisting on addressing something that a school doesn’t really see as problematic – or if I am recommending an intervention that they simply don’t have the resources to implement – the likelihood that consistent coordination of care will occur is low.

Ultimately, in order for consistency and coordination of care to be a reality, there needs to be a dynamic, flexible approach by everyone involved with a focus on practicality and feasibility.

We often hear that all behavior is communication. As a self-described “radical behavior analyst”, what do you do to understand your learners’ thoughts as they are communicated through behavior?

For the purposes of explanation; “The radical behaviorist approaches mentalistic terms in the same way as any other behavior …” (Barnes-Holmes, 2003, p.145), where mentalistic terms refers to our thoughts or thinking. Extending on this, contextual behavioral scientists believe that it is necessary to view behavior as tied to, or a product of, a person’s historical and current context. I consider these approaches invaluable for a broader understanding of behavior.

Language doesn’t stop at words that can be heard. Thoughts or thinking are still verbal behavior. From my perspective, the question is less about measuring the exact thoughts in a learner’s head at any given moment, but more so understanding the history of the learner. I want to understand how past and current context, as well as the social environment in which they operate can have an effect on learning and behavior.

Let me illustrate the utility of this. Imagine that I am working with a learner that has mastered a variety of social skills in a variety of contexts. However, they appear to be unwilling to engage with their peers. Now, this learner may have a history of bullying by peers in a previous school. They frequently have thoughts like ‘I’m not popular’, ‘nobody likes me’, and ‘I’ll never be good enough no matter what I do’. When it comes time to use social skills it may be less of an issue of mastery, but more of an issue of the learner’s thoughts that are the result of a previous experience.

In this instance, having insight into the learner’s thoughts would be very valuable. As an analyst with an understanding of the importance of context and history, I might be more likely to think in these terms when faced with non-obvious barriers to successful outcomes.  My approach might be more focused on practicing positive self-talk, arranging environmental contingencies that are sure to provide reinforcement for attempting to engage a peer, and a separation of the self from thoughts.

Call to action!

Dr. Amanda Kelly, BCBA-D is the Home-Based Programs Director at Firefly Autism Services in Denver, CO. Any reader who would like to connect with Dr. Kelly is welcome to do so by sending her an email at AKelly@fireflyautism.org. Also, Firefly Autism Services is now offering ‘Parent Support and Training Groups’ in Denver. Email Dr. Kelly if you are in the Denver area and would like to participate!

Would you like to be featured in a blog post by Awake Labs? Send an email to paul@awakelabs.com with the subject line “New Blog Idea!”

References:

Barnes-Holmes, D. (2003). For the radical behaviorist biological events are not biological and public events are not public. Behavior and Philosophy, 31, 145-150.
Behavior Analysis Certification Board. (2019). Clarifications Regarding Applied Behavior Analysis Treatment of Autism Spectrum Disorder: Practice Guidelines for Healthcare Funders and Managers. (2nd ed.) p.3. Retrieved from https://cdn.ymaws.com/www.apbahome.net/resource/collection/1FDDBDD2-5CAF-4B2A-AB3F-DAE5E72111BF/Clarifications.ASDPracticeGuidelines.pdf


Teamwork Between Autism Professionals Essential for Personalized Care

It is common for autistic people and their families to seek a wide variety of services to help them be supported and successful in the world. In 2014, the CASDA National Needs Assessment Survey reported that caregivers of school age youth (5-17 years old) used on average 3.2 services from autism professionals in the last 6 months. The amount used ranged from zero to 13 services. This does not count any supports received at school.

As a result, people with autism and their families can end up surrounded by a circle of care.

A group of four people smiling at the camera

It is hugely important for everyone involved in the circle of care to communicate and stay on the same page. In this post published on the American Speech and Hearing Association (ASHA) blog page, the author Rosemarie Griffin, MA, CCC-SLP, BCBA argues that:

“Professionals working toward common goals help their students increase overall engagement… Teamwork between autism professionals can also better teach our students to develop and use functional communication skills across a variety of instructors and environments.”

The Geneva Centre for Autism shares similar advice for teachers to welcome autistic students in their classroom. They recommend:

“…daily communication [should] involve the student, and the teacher [should] read and sign the [communication book] every day and write in it often. Call parents to share good news, and discuss difficult issues by phone or in personal meetings… Let parents know what learning was demonstrated, what new words were learned, and other achievements.”

A woman smiling holding a marker and standing in front of a classroom

People with autism and their families will find that different types of autism professionals may need different types of information in order to provide support. To help make sure that everyone has access to the information they need, it is important to maintain open lines of communication. It is also important that everyone has a good understanding of the health and learning goals being worked on. One way to do this is to use the S.M.A.R.T goals approach – Specific, Measurable, Attainable, Realistic, and Timely – to keep everyone on the same page.

Bonus tip:

S.M.A.R.T. goals work best when they reflect what is important to the person being supported. One-page profiles, and the F-words Profile are great resources for the circle of care to understand what is important to the person being supported.

A young girl writing on a sheet of paper leaning against a table

There are many different tools that exist to help maintain good communication and information sharing with your team. Some people like using an individualized education plan (IEP) binder to keep track of progress at school, as well as communicate and collaborate with teachers and other professionals. We’ve met care teams who share information on Dropbox; others like to get their teams together and meet face to face.

Awake Labs has also created a free tool for better communication and collaboration. It’s an app that is like a high-tech communication book. Parents, teachers, and therapists are using it to keep track and share information related to health and learning goals. This app, Reveal Stories, securely shares pictures, videos, and notes with every person in the circle of care.

Bonus tip:

Reveal Stories is mobile, secure, and can be used by autistic people and their care teams in every aspect of their day to day lives. Your information is at your fingertips for when you need it. Whether it’s pulling up data during team meetings, or reviewing achievements at the end of the day, Reveal Stories can help!

Four different shapes above the words "Awake Labs"

To people who are familiar autism, there is a popular saying that goes: “if you’ve met one person with autism, then you have met one person with autism.”

What this saying means is that each and every person is unique. There is no one definition of autism. And since there is no one definition of autism, then there is no one-size-fits-all approach to building on a person’s strengths and meeting their unique needs.

Effective communication and collaboration are essential to make sure that everyone in the circle of care are working together to support the person with autism at the centre of that circle.


A long road in a desert.

What happens when funding and services for autism are no longer available?

If you’ve been asking yourself these questions, this post is for you:

1. What happens when my child no longer has access to autism services?

2. What happens when funding and services for autism are no longer available?

3. Reduced services & funding for autism – now what?

When the funding dries up and services are no longer available, people with autism and their families are left with few options. In the best cases, families can see these changes coming in advance, such as when children age out of services and families can take steps to prepare. But even in the best cases, it is stressful and overwhelming.

Sometimes, changes may come with little to no warning (like this case in Florida and this case in Ontario). When this happens, it can be downright scary.

A long road in a desert.

So, what can you do?

1. Find a community of people who understand what you are going through.

Meet in small groups or big ones, online or face to face. The autism community is famously tight-knit and gives plenty of opportunities to connect, find support, ask for help, give advice, share concerns, and learn about available options: 

2. Inform yourself about the available options for services and supports.

Ask your community for help, or go to your local advocacy group if you have any questions:

The number and type of supports available depend a lot on where you live. It also depends on the age of the person accessing services, the amount of funding available from payers, and the proximity of research institutions, like Child Bright or KBHN.

Because of the variety of available options, one of the best things you can do is learn how to identify a high-quality service or program. Here are some tips:


There are also online resources available for training & education.

3. Go to your local advocacy organization to see if there are creative funding options like grants or scholarships, research studies, and local programs available at low cost

By signing up to be a part of research studies for treatment through your local university or hospital, you can access treatment options for no cost (sometimes they pay you to take part!). All research studies through these channels have to be cleared by a Clinical Research Ethics Board. 

4. Empower yourself by learning how to navigate the system.

Knowing where to find funding, where to access services, where to find respite, housing, and educational opportunities can be a daunting task. You can start with these 2 resources. You can also ask your community & your local autism support organizations (see 1 & 2 above)

The more information you have at your disposal about the person you support, the better equipped you will be to advocate, answer questions, and make good care decisions. Under HIPAA & PHIPA regulations, you are entitled to have access to your complete record of care. Ask your past providers and caregivers to share the records of care, reports, data, and communication notes that were collected during the time you were accessing services.

Bonus tip – Awake Labs has created a free tool to help securely store & share a complete record of care. If you want to download the app for free, click here. For more information, contact the Awake Labs team at hello@awakelabs.com

A promotional image for the app Reveal Stories. Image is of two phone screens and text that reads: "Set Goals, Track Progress, Improve Outcomes"

5. Don’t give up!

Look to your community for support. There are many people who will want to help you if you need it.

Bonus resources:


Clinical Leadership in Autism Care with Dr. Rue

Dr. Hanna Rue is a leader and a driving force in the implementation of best clinical practices for people with autism and their families.

Her list of accomplishments includes leading the National Standards Project, which is the second iteration of the largest systematic review of educational and behavioral literature for autism. Now, as the Head of Clinical Development at the LEARN Behavioral Network, Dr. Rue and her team are on a mission to develop a nation-wide clinical infrastructure that will increase the standard of care for autism and provide much-needed services to thousands of families across the US.

We are honored to have had the opportunity to speak with Dr. Hanna Rue. In this exclusive blog post, we detail some of the challenges that come from being on the leading edge of service provision for autism. We also discuss exciting technology opportunities and share Dr. Rue’s advice to aspiring behaviorists.

We hope you enjoy this post! Read to the end to find out how you can get in touch with LEARN and Awake Labs.

A picture of a woman smiling
Dr. Hanna Rue of the LEARN Behavioral Network

During this phase of rapid growth at the LEARN Behavioral Network, how do you maintain trust and integrity in your services?

It really comes down to the people in key positions, communication, and scalable system design. When you have motivated and talented people in leadership positions anything is possible.

Our clinical leadership includes individuals with years of experience working with families and clients in a variety of settings. All of our clinical leaders maintain some work in the field. This allows for opportunities to model best practices for other clinicians and is important to determine the impact that new systems or changes may have on the families we serve.

Ongoing communication is also critical and we maintain standing meetings that include data-based decision making at a systems level. We’ve adopted systems such as Feedback-Informed Care (FIC) that allows us to monitor each family’s perception and satisfaction with service delivery. Systems such as the FIC are piloted with a relatively small group of clinicians and families and then rolled out to the rest of the company in a systematic manner. This allows leadership to address any issues and ensure all necessary supports are in place before we expand the system.

As diagnostic rates increase, more families find themselves stuck on waitlists; how does building a nation-wide infrastructure help address this challenge?

It is an unfortunate truth that there aren’t enough BCBAs in the U.S. to meet the need. We set up our regions and centers with a focus on having people with knowledge of the community. It’s important to maintain close relationships with local physicians, hospitals, and community groups to understand the availability of resources. We work hard to avoid waitlists and maintain contact with our families on waitlists. If a family is on a waitlist for an extended period of time, we will make every effort to find a quality provider to get the family access to services.

Our agency maintains a really active recruiting effort and we have the ability to offer positions across many different regions in the U.S. Many of our clinicians are guest lecturers in university-based BCBA programs and undergraduate programs. Using this platform, we can highlight the many benefits of working with individuals with autism and inform students of the great need in the industry. This not only helps our recruiting efforts but also the field, as it may inspire some undergrads to consider ABA as their career choice.

A mother and son. The mother is smiling. Their faces are touching

Based on the results of the 2015 National Standards Project, where do you think the research community should concentrate its efforts in order to have the most impact for people with autism and their families?

What was surprising was the lack of studies regarding the use of technology. We certainly reviewed more studies involving technology in the second iteration of the National Standards Project. I think there is so much more to learn regarding the use of technology and ABA for individuals with autism. The second iteration of the NSP included an evaluation of interventions for adults (i.e., individuals 21 years of age and older). It was troubling to only have 28 studies meet criteria for inclusion in the review. Children with autism grow up to be adults with autism who can benefit from applied behavior analytic strategies. I think focusing on effective strategies for adults with ASD is imperative.

Two men smiling and laughing together. One is a young man wears a hat. The other is an older man with grey hair

What are some of the most exciting technologies currently available to clinicians? How will these technologies ultimately change the clinical landscape?

There are still many clinicians who have yet to use electronic data collection systems. It is exciting to work with clinicians learning to use this technology, as there is often a dramatic increase in efficiency regarding programming and visual analysis of graphical data. Telehealth is another useful technology for behavior analysts. LEARN clinicians make use of video conferencing for clinical direction, parent consults, collecting independent observer assessments (IOA), and training. Video conferencing keeps clinicians across the country connected and enhances collaboration.

Several LEARN clinicians have been using virtual reality (VR) headsets to evaluate how the technology may contribute to skill acquisition programming. I think VR may offer increased learning opportunities for some of our clients. We’ve worked on teaching joint attention using VR and considered VR for safety skills training as well. Finally, I’m really excited about wearable technology. I think there is more research needed to determine how wearable devices might help clinicians develop more sophisticated programming around reducing challenging behavior.

You oversee a lot of graduate research projects. How do graduate students impact LEARN and the day-to-day activities in your clinics?

Graduate students are tremendous assets to LEARN. They are motivated and curious. By supporting graduate students we are shaping future clinicians who can grow to be leaders at LEARN and in the field of behavior analysis. The science of behavior analysis is evolving and applied techniques are becoming more sophisticated. We can contribute to our greater knowledge of the field by having opportunities for clinicians to engage in scholarly activities such as practicums and thesis projects. The majority of our graduate students are focused on single-subject research projects that lead to improvements in client treatment plans.

I think in terms of day-to-day activities, the grad student projects enrich our programming. The behavior technicians become involved via data collection and often consider pursuing an advanced degree and that is really exciting. The projects also highlight to our clinicians the importance of scholarly activity while engaging in service delivery.

A picture representation of a network

There are more and more people interested in pursuing a career in behavior analysis. What advice would you give to new professionals in this space?

Take time to explore all of behavior analysis. Many clinicians work with individuals with developmental disabilities but behavior analysis is so much more. I so value my time in an operant lab. I truly think it helped me to better understand the impact of the environment on behavior. There are also incredible opportunities in areas focused on animal behavior, gambling behavior, substance abuse, and organizational behavior management just to name a few. Listening to leaders in the field like Dr. Pat Friman discuss the vast possibilities of behavior analysis in our world is truly inspiring and may pique your interest in something you’ve not previously considered.

Call to action!

The LEARN Behavioral Network is growing rapidly. If you would like to get in touch and learn about existing opportunities, send an email to info@learnitsystems.com

Do you have an idea for a blog post that you’d like to share with Awake Labs? Send an email to paul@awakelabs.com with the subject line “New Blog Idea!”


Two women talking, one with clipboard

Advocating for your child & navigating the system

If your child has just received an autism diagnosis or you’ve been navigating the system for years, deciding which of the autism services are best for your family can be difficult. Here are two great resources to help parents navigate the wide spectrum of autism resources and be the best advocate for your child!

The Parent Advocacy Tool Kit 

The Parent Advocacy Tool Kit is a great place to start. Whether it is teaching your kid to advocate for themselves or preparing yourself to advocate on their behalf for funding, healthcare, or school resources, this tool kit covers it all!

“The goal of this tool kit is to provide basic knowledge of advocacy and negotiation skills along with useful, practical tools. Although this tool kit is primarily foucsed on autism spectrum disorder (ASD), the information contained is useful for families who have children with all types of neurodevelopmental disorders. This tool kit will show how to apply advocacy skills to different situations throughout early childhood and adolescence.”

Click here to get The Parent Advocacy Tool Kit!

An image with blue text that reads, "Advocacy Tool Kit" and logos of the sponsors of the kit.
Holland Bloorview’s “Advocacy Tool Kit”

The Autism Parent Resource Kit 

The Autism Parent Resource Kit is a great guide that presents all the different resources and services that might be valuable to your child and your family. It is very comprehensive (and therefore very long – 114 pages!). It is an almost complete guide to where to look for the different types of support in Ontario. If you’re not from Ontario, it can still help you understand what might be available in your area.

“There is no one right way to use the kit as each child is unique and parents/caregivers will have varying information and resource needs at different phases of their child’s life. As such, this kit takes the view that, “If you’ve met one child with autism, you’ve met one child with autism,” and therefore, not everything in this kit will be useful to every parent, or useful in the same way”

Click here to get the Autism Parent Resource Kit!

A white page with the text, "The Autism Parent Resource Kit" and the Ontario Government logo
Cover page of “The Autism Parent Resource Kit”

 

Note: the information specific to the Ontario Autism Program (OAP) in this guide is a little out of date after MCSS Minister Lisa MacLeod announced changes to the OAP on February 6, 2019. The rest of the information is still incredibly useful!


Reducing waitlists for autism services in Ontario

Sara John, BCBA moved back to her home province of Ontario to help reduce the waitlist for autism services. This is no small task; thousands of people with autism and their families are struggling to get support, waiting on some list, somewhere.

Sara gained valuable experience while working with a well-established company in Florida called Positive Behavior Supports Corp (PBS). She is excited to apply what she’s learned to help reduce the waitlist in Ontario.

We first met Sara at the Geneva Symposium in October and caught up with her recently to hear more about how she is serving families in the Greater Toronto Area (GTA).

After working with PBS in Florida for the past 5 years, you returned to your home in Toronto. Welcome back! Can you share with us what inspired you to come back to Canada and what excites you most about working with kiddos & families here?

When my husband and I decided we wanted to come back here, I began researching potential jobs in Ontario. The more I researched the state of autism services in Ontario, the more I realized how many families are struggling to get support, waiting on a list somewhere.

Although I know we can’t reach everybody, I am hopeful we can help at least a few families improve their quality of life. This was the reason I approached the corporate team at PBS to pitch the idea of setting up a branch here in the GTA. They shared my vision to make this international move a reality, and here I am!

How are you using what you learned during your time in Florida to support families in the GTA?

While I was in Florida, I gained valuable experience and knowledge in ABA from amazing and talented mentors. I worked with people of all ages and with a wide variety of strengths and needs. PBS has given me many opportunities to grow, which I hope to share with my team here in Ontario.

In my current role as a regional coordinator, I will not be working directly with many families. I am here to help my team better themselves as therapists. My goal is to help them increase their knowledge, experience, and understanding of ABA as well as their ability to become strong leaders in the field. This will help us reach many more families in our province.

You shared a story with me about a family who ended up “firing” you because you did your job so well. What kind of advice would you give to a new family so that they too can also end up “firing” you?

I want to clarify, the reason that the family didn’t need my services anymore wasn’t because the child didn’t need ABA; rather because the family was much more capable of implementing ABA on their own.

The reason they were able to do this – and any parent can also do the same – is because they understood the necessity for consistency. The family was implementing the recommended strategies in the home the same way our staff was implementing within session.

The most important factor is consistency. It is also the most difficult. It is easy for a provider to come in, recommend changes and then leave. If this is the case, families will have difficulty implementing strategies consistently.

When families have the right support from their service providers, they can learn how to implement appropriate care strategies. When parents and therapists work together as a team, then there will be success.

I can imagine that you have noticed differences between services & support to families provided in Florida compared to Ontario. What are some of the things that are done well in our province, and where do you see room for growth?

Coming back to Ontario, it’s been really encouraging to see that the space has been moving in the right direction. Especially in terms of the intent behind the new Ontario Autism Program (OAP), which looks to make support services more family-centered.  Everyone – including advocates, service providers, the community at large – is doing their best to help the countless families who need services. The effort to bring those services to families is there.

In my opinion, the most important improvement is to bring more clarity to the OAP. There are too many grey areas. What I mean is, it’s difficult for families to know exactly what they can and can’t get covered under the new program. It’s hard for families to know how to exercise their rights under the OAP, who to turn to for help, and how to get information about waitlists. It’s even hard for service providers to navigate the system. There needs to be more clarity for providers and families so that services can be provided seamlessly and ethically.

Call to action!

Sara John has a team of talented providers who are ready to provide services to families in the Greater Toronto Area. If you are a GTA family who is seeking a qualified ABA provider, send a message to Sara at sjohn@teampbs.com

Do you have an idea for a blog post that you’d like to share with Awake Labs? Send an email to paul@awakelabs.com with the subject line “New Blog Idea!”


Care with Uncompromising Integrity

Why is it important to provide care with uncompromising integrity? According to Christine, uncompromising integrity helps improve quality of life and sets people up for success all the way from childhood through to adulthood.

Christine is a mother, a BCBA, and an entrepreneur. She is pursuing her mission to provide the best support available to children with autism and their families by opening her own practice in the Seattle area. We had the chance to speak with Christine. We spoke about her philosophy of care, her first experience working with a BCBA, and the role of mental health support & technology in her practice.  

After a successful career spanning from New Mexico to Washington, you are about to open your own practice; congratulations!

Can you please share with us why it is important for you to open your own practice at this time, and what makes you most excited about this opportunity?

Since transitioning from public school to private practice, I have worked with some of the bravest and most incredible children and their families. The science of ABA opened up the opportunity to have an impact on the world, one person at a time. I’ve always been an optimist, a dreamer, and I am driven by the desire to have an impact. I am now opening my own practice so that I can do just that.

When I first began teaching, diagnostic rates were about 1 in 150. Diagnostic rates are now 1 in 59. In 20 years, 1 in every 59 young adults will have an autism diagnosis. At these rates, this is not a diagnosis that will affect just the individual and their family members, this will impact society as a whole.

Early, intensive intervention can change what that journey into adulthood looks like. It can help ensure that these future young adults have a skillset that allows them to be productive community members. Most importantly, it can help them have the best quality of life possible.

Some waitlists are up to two years in length for diagnosis and another 18 months for ABA therapy. Many families are often missing the critical window for early intervention, which is between 2-5 years of age. We need more BCBAs, more RBTs, and more agencies providing the highest quality of treatment available.

Opening my own agency will allow me to ensure that the families I serve are receiving the best treatment possible, and that it is delivered with uncompromising integrity. It allows me to continue to be a part of success stories, not only for my clients, but of the employees who are part of my team.

When you meet with families for the first time, what are some things you do to help them build trust in you as a therapist, and in the practice of ABA as a whole?

No two stories are the same. I’m a professional and parent of a child on the spectrum, and I have experienced challenging moments that seem insurmountable at times. Meeting a family with understanding and working together to identify the most important goals for their child are the first steps in building trust as a valued member of their child’s team.

One by one, families will begin to experience hard won successes like first words or calmer home routines. They will see their child light up to greet their clinical team. All this helps build trust in myself, the team, and the practice of ABA.

Family education and involvement are also key components of any good, trusted ABA program. As parents see what they feared was impossible for their child happening every day, as they witness the devotion, hard work, and joy of their clinical team, parents naturally become part of that team. Parents who are involved help bring consistency in all environments. This allows their child’s progress take on a remarkable trajectory.

ABA can dramatically increase the developmental trajectory of every client who receives it. It is truly remarkable to have a resource like this available. I always say that ABA is hard work, but it is heart work, so it makes it all worthwhile.

It’s an honor to work with children and their parents. I always keep that in mind, and strive to live up to that honor by providing the highest quality of care.

Thinking back on your first experience working with a BCBA, can you tell us what inspired you to follow that path yourself?

The first time I had the opportunity to collaborate with a BCBA, I was teaching a special education kindergarten class. One student was experiencing significant challenges and he was homeschooled while he went through a medication change. I had the opportunity to work with his ABA team during his home instruction.

My previous education and teaching experience had taught me to spend a significant amount of time focused only on behavior management. I learned that with ABA, the focus is on learning new skills with positive reinforcement serving as motivation.

I was in awe of the ABA team’s ability to motivate this student. His skill acquisition rates were very impressive. ABA methods allowed this child to make significant progress that I had not been able to achieve in the classroom.

The moment that truly inspired me to transition from teaching into clinical practice was when I observed this student interacting with his mom at the end of a session one day. Many parents of children with ASD often find themselves feeling overwhelmed with each task, which can have an impact on the whole family. This mom was able to calmly and effectively use ABA methodology to navigate daily tasks with her son.

At that moment I realized ABA was really about improving the quality of life not only for the child, but the whole family. That’s when I knew I had to follow this path.

Can you speak to the importance of addressing mental health challenges as part of your therapy?

An ASD diagnosis is rarely a single diagnosis. ADHD, Depression, Anxiety, and medical diagnosis such as epilepsy co-occur at a very high rate. Depression to the point of suicidal ideation and debilitating anxiety to the point of not leaving home is a common story I hear from parents of children with ASD.

It is imperative that ABA extends beyond early intervention, into adolescence and adulthood. The skills the learner needs to acquire change over the course of a lifetime, but the need for assistance may not. An effective ABA practitioner has an expanding repertoire of skills to address the diverse needs of their client. Acceptance and Commitment Therapy, and Relational Frame Theory offer excellent tools for our clients to successfully navigate mental health challenges.

Are there any innovations in technology that you think might help practitioners better address challenges in delivering care?

An ABA clinician should always consider themselves part of a larger team for all of their clients. Collaboration with other skilled clinicians such as SLPs, OTs, PTs, Medical and Psychiatric providers is imperative for true success.

One of the biggest challenges in this collaboration is effective communication. Communication between parents and all team members can ensure that critical daily information can be shared efficiently and make the difference between a challenging day or a successful day.

Each clinician is devoted to success of every one of their patients and coordinating care can be difficult with competing schedules. Technology allows opportunities for better continuity of care. Telehealth allows clinicians to remotely view another practitioner’s session with a shared client which can truly allow for the best co-treatment. Web-based data collection platforms offer the opportunity for real time viewing of data collection and sharing of these strategies and resources.

Technology can ensure that all private health information is securely stored and protected while allowing members of the clinical team to communicate and collaborate frequently and efficiently to better provide exceptional client care.  

Christine is looking for a partner!

Christine Domschot, BCBA, is opening her own clinical ABA practice in Seattle, WA – but she can’t do it alone. She is looking for a partner to join her and help grow her business. If there are any readers who are dedicated to ensuring that clinical integrity is never compromised, please reach out to Christine on LinkedIn.

Do you have an idea for a blog post that you’d like to share with Awake Labs? Send an email to paul@awakelabs.com with the subject line “New Blog Idea!”


Trust in Autism Therapy

We love talking to people who are passionate about their work. It’s even better when they share the same values as we do at Awake Labs. Jessica Reed, MA, BCBA was no exception. Jessica has an incredible story about why she became a BCBA. She shares her first experience with a young adolescent with autism and some tips on how to build trust in autism therapy.

From Corrections, to a Non-Profit, to Public School District

Jessica began her career by working in the education department of a prison in Idaho. She loved it and was completely inspired by her boss and mentor. By Jessica’s account, her boss was a “total badass” who dedicated her life to supporting survivors of sexual violence.

All signs pointed Jessica towards a career in the prison system. Unfortunately, 2008 came around and brought with it a sharp decline in public sector funding. This led Jessica to find work with a non-profit organization as a youth mental health specialist.

Jessica was assigned to provide in-home support to people with autism and their families. She loved this new role. After a few years, she reached a crossroads; the only way Jessica could grow her impact was to become a BCBA.

As a BCBA, Jessica worked in schools and felt the strong spirit of collaboration often seen in school-based teams. Inspired by this experience, she now provides ABA therapy and other positive behavior supports in public schools as the District Behavior Services Manager at Cabrillo Unified School District in California. 

Maintain Perspective: Jessica’s Advice for Aspiring Behavior Analysts

“The most important thing a young Behavior Analyst can have is perspective. As clinicians we are responsible for participating in families’ best and worst days of their lives. I feel so blessed to have been a part of huge milestones, such as when teenagers speak their first words, or when toddlers alert their parents to an ear infection for the first time. 

But I’ve also seen the grieving that parents experience when they realize that their child has difficulty making friends and is probably lonely. I’ve seen countless parents cry, worrying about who will care for their children when they no longer can. 

ABA has such a strong emphasis on collecting data, but we have to remember that the people we support are more than these data points. There’s nothing worse than walking into a session and seeing a practitioner’s face glued to their iPad, sidetracked by the need to record data, rather than react to what is in front of them. 

Compassion can go such a long way in this field.”

Going the extra mile for a nonverbal child

The first person with autism that Jessica worked with at the non-profit was a 12-year old boy. He was nonverbal and regularly showed severe aggression. Jessica did not feel prepared to support this boy and his family. The only “formal” training on autism she had received was watching a film about Temple Grandin.

Because of her dedication, it didn’t take long for Jessica to excel in her new role. She loved this family and their child. She even learned sign language on her own to better understand the person she was caring for. On weekends and after work, Jessica would also take any classes available to learn more about autism.

Professional Boundaries Protect Relationships With Students

According to Jessica, professional boundaries play a huge role in delivering care. When the lines are blurred, then personal trust and rapport can be built. However, the professional relationship is compromised. This can end up having a negative impact on the person at the centre of care.

Like the majority of people in this field, Jessica became a BCBA because of the emotional connection she felt with that first family. This is a feeling that extends to each new person she cares for. This connection may feel like a good path to friendship, but to be seen as a friend makes it difficult to say the things people don’t want to hear.

Both parents and professionals want what’s best for the person they support. But a professional has a different perspective that comes from their training. They also see things through a different lens because at the end of the day, the person they support is not their own child.

“Professional boundaries are important. When the boundaries get too blurred, it can affect the relationship with the student, which is such a sacred thing.”

Utilizing Trust, Compassion & Empathy

Educators and therapists do not deserve blind trust – trust is earned. According to Jessica, the best way to earn that trust is to show compassion and empathy. This is best illustrated in a story she shared:

“I have a students that I actually worked with in a previous job, in a private setting, so I would work with them in their home. There is a huge difference for this kiddo at home compared to school. They thrive at school, but struggle at home. 

Even though I know how hard the family fought for services, I actually made the recommendation to scale back the interventions at school. The student no longer needed them. This was hard for the parents to hear. So, in the IEP meeting, I held the mom’s hand and looked her in the eye. I told her that I had her back and that if anything changed, I would reinstate her kiddo’s behavior services. 

After the meeting, the mom followed me to the parking log, where she teared up and thanked me for this. I think it’s because I validated her experience and showed her that I could understand what she was going through. 

ABA can be such a black and white field, everything objective, measurable, observable. There is so much more to building trust than to know how people are reacting to their environment. Showing empathy goes a long way to bridging gaps, to moving away from being adversarial. Everybody has the same ultimate goal.”

Connect with Jessica!

Are there any aspiring behavior analysts interested in connecting with Jessica? You can find her on LinkedIn by clicking this link.  Introduce yourself and share with Jessica what you thought about this post!

Do you have an idea for a blog post that you’d like to share with Awake Labs? Send an email to paul@awakelabs.com with the subject line “New Blog Idea!”