Talking TelePBS Episode 1

Talking TelePBS Episode 1
Podcast Transcript
July 2021

Podcast announcer:

Highlighting research and real-life case studies, this is Talking TelePBS, a podcast exploring the delivery of positive behavior support through telepractice and the benefits of incorporating an online approach. And now here's your host, Orion Kelly.

Orion Kelly:

Welcome to Talking TelePBS. I'm Orion Kelly, and I'm autistic. this podcast explores the delivery of positive behavior support through telepractice and its benefits. So whether you're a practitioner, a parent or carer of an autistic child or someone who's just interested in learning more about the adaption of PBS practice to an online environment, you can view the many resources online right now at ndiscommission.gov.edu/resources.

Podcast announcer:

Talking TelePBS with Orion Kelly.

Orion Kelly:

On this episode, I'm joined by TelePBS lead researcher and practice leader of Innovation and Aspect's therapy, Dr. Genevieve Johnsson. Genevieve, thank you for joining me.

Genevieve Johnsson:

Thanks, Orion. It's good to be here.

Orion Kelly:

I'd love to know a bit about your story. Can you tell us who you are, what you do and your journey to the research we're talking about?

Genevieve Johnsson:

So I am a psychologist by trade and I worked for Autism Spectrum Australia as a practice leader for innovation. And so I guess my journey, we've been on a quite a journey at Aspect with our telepractice research and approach. And I also am an honorary with the University of Sydney Centre for Disability Research and Policy. And so I partner with them on a number of research projects as well including the current one we're going to talk about today, which is TelePBS, which I'm super excited about.

Orion Kelly:

Okay. Well, let's start at the start and break this down for us please. What is TelePBS?

Genevieve Johnsson:

Okay. So it's not just a tricky title. It is actually PBS, which is positive behavior support and that's being delivered by telepractice. So when I say telepractice, because there's telehealth, there's e-health, there's lots of different ways to talk about telehealth, telepractice. So we say telepractice because we really do focus on it looking at lots of different modalities. So it's not just video conferencing because often that's the go-to thinking, it has to be face-to-face video conferencing, but it's also audio-only conferencing because what we found is a lot of our participants might not like to see you face-to-face. So we might just use audio.

It's also telephone. It's using other innovative ways like just using the chat box on your Zoom video conferencing, text messaging, it's emailing and it's just a complete combination of these. So when I say telepractice, it's looking at how we use technology to deliver a service that is at a distance. And that kind really wraps up what TelePBS is.

Orion Kelly:

And for those that aren't actually familiar with PBS, can you talk a bit about what this positive behavioral support means?

Genevieve Johnsson:

Absolutely. And so I guess it really is that person-centered model of service. So it's really about where we see an individual with a disability having and presenting with that behavior of concern. It's really a targeted program to look at how can we build skills, how can we understand the reason behind that behavior, how can we teach new skills and make changes in that person's environment to increase their quality of life. And so it's a very much positive, it's very much proactive thinking about what can we do to make changes for that person so they don't need that behavior concerned anymore.

So PBS or positive behavior support, it's the model of support that we use under the NDIS Quality and Safeguards Commission when we're providing service to any person with a disability. So we're guided by the PBS-capability framework. So all of this is available on the commission website. And so behavior support practitioners providing these services are guided by that PBS capability.

Orion Kelly:

And those listening should definitely check out the resources on the website. They're awesome. Now we've been through a very bizarre time in our life with the COVID pandemic. I'm interested, how did the COVID pandemic actually impact practice?

Genevieve Johnsson:

Yes, this is one of my favorite thoughts for this last year. So we've been looking at telepractice since... So I've been looking at telepractice since 2015. And when I first went out Western kind of promoted this model as a way to train rural and remote staff to support kids on the autism spectrum. And so at the time there wasn't a huge amount of telepractice happening.

Yes, it's been happening for a long time, but it was just that slowly gaining traction in kind of our practice. And then COVID came and boom, it was like, here it is. He's telepractice. So what I'd say in terms of how did COVID impact our practice and our understanding of telepractice I reckon we had about... If I've been looking at telepractice for six years, I reckon we had about six year progress in that six months, which is pretty phenomenal.

So it was super exciting. And I love the idea that my passion, my area of interest is in the spotlight. However, what I found in some of that early research in 2017 was that we put forward a bit of a theory about change management and that yes, telepractice practice is amazing. It's going to be revolutionizing our support, getting out to rural and remote areas. It's another way that we can deliver quality services. It was so exciting, but what we found is that a change management approach was needed which meant that staff needed time to basically adapt to the model, get training and support, change that perspective around can I deliver quality services when I'm not actually there.

So that kind of change management approach when COVID hit and then we flipped our work force online in a matter of weeks. We didn't get to do that so much. So what I know is that COVID means that it has opened so many practitioners eyes. And when we've been doing a lot about interviewing, we've talked to practitioners and who said that I wasn't really keen on it before, and then I was forced to do it and now I actually really like it. And so that was really cool. And they kind of came back and said, "Hey, why don't you tell me this before?" And I said, "I did tell you these before."

But we also found this with our families too, that they were forced into tele practice as a part of COVID or they kind of didn't have a choice in services, kind of no services or online services. And what we've found is a lot of families are saying, "Hey, this is pretty good. This works for me. I can stay at home in my pajamas and I can still get access to good quality services." So yes, it has changed the way that we view online services. It's put it in the spotlight and it absolutely is here to stay. And now it's just taking stock and thinking, okay, we need to make sure that what we're doing is best practice and in line with all of our different best practice. So yeah, big impact.

Orion Kelly:

Well, I'm a massive fan. So I'm glad that COVID is kind of dragging the industry, kicking and screaming into this because I think it's just fantastic as an autistic father with an autistic son and also not only am I autistic and my son is autistic, but we live in rural Australia down on the coast. And I was actually wondering, what do you think the state of behavior support is in rural and remote areas of Australia?

Genevieve Johnsson:

It's not great. I'm going to be honest. I think you would probably know that. The thing is for so long we thought that the services out in rural and remote areas, the worst off with behavior support, we are now seeing that across all areas in metropolitan areas, we're seeing extensive wait lists now. We know that behavior support is absolutely crucial. We know that there's people who have these behaviors of concern that can be at significant risk of being subjected to restrictive practices, which is where we see things like medication or physical changes, physical restriction on a person for being able to do what they want for the purpose of kind of coping that behavior.

So really high risk for some of our most vulnerable participants, the extreme stress on families. So what we're seeing with behavior support is a huge, I guess, a huge lack of behavior support practitioners. So definitely the demand for the services is far outweighing what we have in terms of supply of services. And so I guess that really drives me into understanding telepractice and what it can do, not just for our rural and remote communities, because it absolutely can connect them in to services wherever they are. So it's how we can look at telepractice and how it can really increase the efficiencies across all of behavior support. We know when we're delivering services via telepractice that means no travel. So more time, less travel that potentially translate to more clients of the wait list and that's a huge improvement for what we can do.

Orion Kelly:

Fantastic. Well, let's talk a bit about the research now. So what does the research actually say about behavior support via telepractice?

Genevieve Johnsson:

Okay. So we recently had a narrative review published and that looked at the policy and guidelines in Australia around the deliberate of support by telepractice. And we also kind of delved into the evidence-base around it as well. And so what we found overall is that it is an emerging area. This is known across all of telepractice, but in terms of behavior support by telepractice, it is an emerging area. Most of the research is overseas, and most of it is based on the principles and practice of applied behavior analysis. And so this includes things like functional assessment. So working out what is the function behind behavior and then functional communication, which is putting in place a plan to match that assessment, putting in place a positive behavior support plan to be able to reduce that behavior concern. And so that involves teaching skills and different ways of communication.

And so those two in itself are the basis for a positive behavior support approach. There is a lot more and we look at the PBS capability framework. There is a lot more that we kind of are interested in, in the research and that is things like more around the implementation and also monitoring the programs and kind of that follow up. And so the research at the moment is quite pointed. It's quite set on those areas but it is saying that yes, we can do a good functional assessment. We can put in place some good plans for the delivery of behavior support.

The research, however, is mostly centered on young children, especially in early childhood and some adolescents that are on the autism spectrum. So in Australia, so in terms of how this translates to and this research that we know so far, how this translate to Australia and working under the PBS capability framework, there is actually so much more we need to learn because we can learn in a clinical setting that yes, we can see and we can learn what, when we're working directly with one family, that yes, we can understand that behavior. We can support that family to put in place and strategies to help that. But there's so much more that we need to learn about PBS.

So often when we're working with a family, there's lots of layers of complexity that we see. And so all of those kinds of things need to be taken into account. So we have done in response to understanding a bit more about their past research is that we have been conducting our own TelePBS research since 2019. And at the moment we've been going through all of our interviews. So we've had 26 interviews so far. What we've found is so much more than just, yes, you can do a functional assessment. Yes, you can do functional communication training. It's more about understanding what works for who and in which contexts. So that context is so important for setting up a successful TelePBS service.

So what that means, that context means it's understanding and both parties. So both the practitioner and the person with the disability and all their support team. So everyone coming to a shared understanding of what TelePBS looks like, because it does look different. We're online, we're not there in person. So going through those expectations and then for the person and their support team to make a really informed decision. And so based on everything we've learned around tele practice and TelePBS, we developed some resources to help that decision-making. And so we have a guide for family. So it's called is TelePBS Right For Me and My Child.

And so that goes through a lot of information to help you make a really informed choice. And then on the other side, we have practitioners like we have a resource for them to say, are you TelePBS ready and able? So we feel that PBS practitioners have the opportunity to add TelePBS as a tool to their toolkit. And so this really helps them get on the right page with TelePBS, understand how it can map to that good practice.

Orion Kelly:

Now, I bet there's practitioners listening to us right now and going, "Yeah, okay, Gen, but I'm a technophobe." I just want to know let's get this straight because you've got a lot of research, a lot of experience. What kind of qualities do you actually see in a successful TelePBS practitioner?

Genevieve Johnsson:

Do you know what that is? One of the biggest questions that I'm not very good on tech. I don't know my tech, I'm not very technical, but what I found, and this is over years of research that it's funny who thinks they're not good with tech who really embrace a telepractice practice approach because you know what, it's not about your tech skills. It actually is more than being able to get on a Zoom call, get on some type of video conferencing software, get on the phone and being able to do that. Yes, that stuff helps, but you can learn that. You can YouTube everything these days and there's so many telepractice resources out there. So practice your technical skills that can be done.

But what we've found is that aside from the technology, the most important things that are a part of a really successful TelePBS practitioner is the soft skills, is the stuff like the adaptability. So being really flexible and being creative and really open. So in your perspective, so like I said, some PBS practitioners came in saying, this is not for me, I like to be there. And so what we found is the people who embraced it, they really ran with it because they were open to new ways of working. They thought, what can I change? Look at my practice. How can I translate that to being online? We've seen some amazing innovation in such a short period of time.

The stories I hear over the last year of what our PBS practitioners have done and how they've adapted practice to be able to make sure that their families can feel connected has been phenomenal. And so I think that no, it's not just about technology, it's about those soft skills. Being able to develop relationships, being able to use that technology, to be able to keep connecting with families.

Orion Kelly:

All right. I guess this is a burning question probably of people listening right now as well, can you really complete an accurate functional assessment via telepractice?

Genevieve Johnsson:

Yes, that is one of the burning questions that I came into my research and this area of practice with, because yes, I'm a psychologist. I work with participants with behaviors of concern, and I came in thinking, can I really get an accurate picture without being there in person? Can I actually understand what is happening for that person? And yes, it's not a perfect science, but yes, absolutely. From what we've been hearing from practitioners, what we've seen in practice, what we've learned from the research is that yes, you can, it's going to look different.

And that comes back to that being open, being flexible, being creative in the way that you adapt your practice. So what we've found and what we know is when were gathering historical data, when we're wanting to find out more about the behavior it's done through interview, it's done through sitting down, sitting down like you and I are now and chatting through what does that behavior look like? What was happening at the time of that behavior? And how did you respond to that? What kind of change for that person?

And so all of that can be done online. Things like collecting all the data, completing assessments. We've seen a lot of our practitioners, everyone's saying, yep, this is all pretty good. And it actually lends itself really well to telepractice because what we found is that we can bring a whole bunch of people together very quickly and very easily. And I think that's really important for when we see something like a complex behavior. So when we say like a risky behavior, something where we've identified a restricted practice, we need to get an interim response plan, boom in a month, we need to have that response planning. We need to get a lot of people to the table to talk through what that looks like to get that plan done.

So with telepractice it's so quick and easy to be able to jump online, go through a lot of the information. So yes, absolutely gathering data, finding out about their behavior is so good. The observation part that this is the sticking point for a lot of practitioners. I know that when talking through the interviews and through the whole journey of telepractice that I've seen is that we've had some practitioners say, "Well, I don't get a feel for what's happening there. I don't get to observe the behavior." But what we found on the flip side for a lot of practitioners when we've been studying this over time is that it's not so sticky after all. It's not such a sticking point anymore because practitioners have let us know that actually it's kind of cool like they set up the device on the side, I get to see the natural environment.

I get to see that person, the interactions, chances are if I went there in person, I would change that. It would be either a matter of them being interested in me or distracted by me or I might actually make the behavior worse. It's funny because the term of fly on the wall came out of a lot, interviews and over time. And so our practitioners are started to say, I can actually be a fly on the wall, observe the interactions environment, get a really good understanding without being there and that's been a real plus.

Again, it's not a perfect science. Other times it's about taking that device around the house, looking all around. So trying to get as big a picture as you can of that environment. And what we've found is people have been able to get accurate assessments. Families have told us, yes. I felt like they really got what life was like for me here. The short answer is yes, you can and the way to get through that is being flexible, creative, and really open to adapting your practice.

Orion Kelly:

And from my own personal point of view, I can say too, this is just my experience. My seven-year-old son, I mean, he's only seven, but he masks when you take him out of the house, any safe space, he's him. If I take him to see you in practice, he'll probably mask. And then it's like, no one, it's a lose, lose situation. So that fly on the wall perspective, that ability to get them in their safe space. Again, this is just my own personal experience. I can only see as beneficial.

Genevieve Johnsson:

Yeah, that's right. And often we kind of go in there with this idea of I need to see the behavior of concern and how helpful is that if that's what we're there for. It's not like what I want to say as a psychologist. I want to see how this person interacts, what their strengths are, what their likes and dislikes. And I don't get that from being so focused. I get that from observing everything in that person's life in their natural state like you said, because we do see that, that masking. We see that changes as soon as we go into that environment. I've been into so many schools who the teachers say, well, can you come every day? We never see these kinds of behavior because it's so different when I'm there. We don't see the behaviors of concern when I'm around. And so absolutely, I think it does have that benefit for so many.

Orion Kelly:

It's a game changer. Now, how do you know it's actually going to work if you're not there to support it?

Genevieve Johnsson:

That's a good question. I think a lot of PBS practitioners really grapple with this and do you know what? It's actually the same, regardless of whether it's online. I think that when we develop these wonderful behavior support plans, these long behavior support plans, and we hand them over and we say, "Wow, check out what we've done together and it's being collaborative effort." We're still walking away, we may come back there and we might kind of check in every now and then, and we look in, and we say all the visual supports on the wall or, "Wow, you've done an amazing job." Putting them up, but are they being used? And so I don't think that changes whether it's online or not, what it really comes back to is do you have a good relationship with that provider or that person who's implementing that?

Have you thought about their context? So what works for them and really kind of met them on the right page with that. And so I think that in terms of that implementation phase, in that monitoring, sometimes telepractice can be really good because you can have more frequent check-ins. So it's like, "Okay, let's set up a weekly meeting and we're just going to catch up and there's no pressure. We're just going to sit together and work through some of those issues." Rather than, "Okay, when can I come out for my big visit and I'm going to be on site and it might be a little bit different." I think taking that step back and really kind of help that relationship. And so, yes, it's going to be tricky, but that's not going to change because of telepractice.

Orion Kelly:

This is a fascinating part to me. So let's dig into the relationship part, which we'll just try and unpack this a bit because I think the question still remains. Okay, yeah, sure but can you really connect with participants and their support networks via screen?

Genevieve Johnsson:

Yeah, I think absolutely. So from our research, from everything we've done, we've found that relationships are that crucial piece in a successful TelePBS service because I'm not there with you. I don't understand what life is like for you there. And I can't begin to put myself in your shoes because I'm not there. So I completely understand. So having that acknowledgement early on, developing that empathy and understanding for the family and building on that relationship is important. Now, a lot of families have multiple levels of complexity. And so it's working at the pace of the family. And so what we found with all of this is that online families have been able to still feel connected.

And in some ways we've had feedback also that it's actually, I'm feeling a bit more comfy because I don't have to clean my house and I don't have to drag all my kids out to get to an appointment to see you or you don't have to come here and the chaos of the house is just making it really hard for us to develop a relationship. And so me, when I'm online talking to someone, I do like to see their face. So sometimes that's come through the research a little bit that having a visual someone on the other side, but then again, it comes down to your supports, your choice.

So if talking on the phone is better for you, then we can develop that relationship. And so, yeah, it really does come back to the PBS practitioner's ability to be patient, understanding and empathetic for families. That's really going to help develop that relationship. This is regardless of delivery mode to be honest. We see this in-person we see this on telepractice. I think we need to just step it up when we're online because we aren't there to understand.

Orion Kelly:

Just quickly a thought that popped in my head is too mom or dad who can't always get to appointments can Zoom in from work. Grandma, grandpa, auntie, uncle, carer support worker could all join the conversation from wherever they are. It's a bit different to say, can you join us for 15 minutes while you're at work rather than can you get in the car drive 45 minutes across the city, see us and then, so to me, that's a clear benefit. The more people involved in the conversation I can only see in the outcome would be better.

Genevieve Johnsson:

Absolutely. I guess that's one of my favorite parts about telepractice is you can all live in the same city. It's still really hard. I live in a metropolitan city and it's an hour to get to some places. And so I can just jump online and we can all be on online together. And you're so right about the multiple carers and family members as well because often kids are not just with one primary care all day, every day, there are lots of different carriers. They stay at grandma's house, they're at grandmas or grandpas every afternoon.

Sometimes one of the primary care gets most of the therapy and the other parent doesn't hear much about it, get second hand information. And we have like these amazing case studies throughout our research, showing parents, both parents being able to get on the same page and saying, actually saying those things to us, we've been able to get on the same page about everything for the first time ever. And so I think that telepractice has just opened up that ability for people to connect and multiple people to connect. And we know that that collaborative relationship working as a team is the way to go for anything around positive behaviors.

Orion Kelly:

Well, it all seems like it's all happened at the right time. It's all come together and it's ready to go. So where to from here?

Genevieve Johnsson:

Okay, so we are continuing our research, continuing to find out more. I don't think the journey of discovery will stop ever in this space. So I'm always open to chatting with anyone who's excited about telepractice and TelePBS. So as part of this project that we've been developing, so we have done some research, we've put together a really nice report on what we found so far. We've been making some videos with a family and some of our participants, as well as our PBS practitioners and managers. And we also have some podcasts from yourself around which we're really excited about and the guidelines too. Don't forget the guidelines.

So we have the guidelines for families to make the informed decision for our practitioners to get TelePBS ready. And we also have our third resource, which will be online, which has for practitioners, PBS practitioners to align their TelePBS practice with quality services. So a lot of tips in there about how can I adapt my services. So all these resources are available on the commission website from the 1st of July. So we're really excited to keep working in this space to keep learning and to work together towards a great future.

Orion Kelly:

It's been great chatting, thank you so much for your time, Genevieve.

Genevieve Johnsson:

Thanks Orion it's been great to be here. Thank you.

Orion Kelly:

My guest was TelePBS lead researcher and practice leader of Innovation Aspect Therapy, dr. Genevieve Johnson. Talking TelePBS is a podcast produced in collaboration with the NDIS Commission, Autism Spectrum Australia and the University of Sydney. I'm Orion Kelly.

Podcast announcer:

Thanks for listening to talking TelePBS with Orion Kelly, a podcast, exploring the delivery of positive behavior support through telepractice and the benefits of incorporating an online approach. To learn more about adapting PBS practice for the online environment, visit ndiscommission.gov.edu/resources.