Supporting Families of Children with Hearing Loss: The Power of Telehealth Services with Nell Rosenberg

Hi, there. I’m Dr. Amy Sarow with this week in hearing. And today we’re interviewing a nationally recognized listening and spoken language leader to discuss digital hearing services. So as we know, Hearing and Speech Month is this month in May, and Clark is active in the hearing loss community, raising public awareness, knowledge and understanding of the options available to those with hearing loss. And they recently launched their premier virtual listening and spoken language services for families of children with hearing loss. So here to join this discussion with us today is Nell Rosenberg, who is a speech language pathologist and national director of Teleservices. So, Nell, thanks so much for joining us today. We’re excited to have you here. Thanks you so much for having me. I’m looking forward to the discussion. Great. So I thought first that we could just get started. For anyone who’s unfamiliar, could you give our listeners some background on the Clarke school system and what types of services you provide? Of course. Clark has been providing services to children who are deaf and hard of hearing and their families for over 150 years. And our students at Clarke use technology such as cochlear implants and hearing aids to access sound. And then our specialty staff helps them learn the skills they need to listen, speak and succeed alongside their hearing peers. Our goal is always for children to be in the mainstream setting with their hearing peers as soon as possible. We offer a continuum of supports from infants all the way through high school and teenage years at our five locations on the East Coast as well as in mainstream settings in. Home and now all throughout the country and even the world with our Tvisit tele-services. Wow, that’s amazing. So even here in the United States and even outside yes, we even have international families now, so it’s been incredible to see. Okay, and so in the international representation, what places are you having students tune in from? We’ve had kids from all over, but we actually currently have a little bit of an influx from Bermuda, which has been interesting because a very small nation, we have a student from Turkey, and we’ve had many other nations represented in the past. Wow, that’s amazing. And how long has your program worked in the teleservices care model? So Clark has been working in T visit tele services since 2011. So we were really trailblazers in the field at that time. We were very fortunate to get a grant to invest. How effective and Efficacious could tele services be for young children with hearing loss in their families. So in those early years, we were focused on birth to three, or EI, the early intervention years. And so we piloted an experiment with families who were with children who are birth to three to see could we provide the same quality and level of services that we did at our centers in person. And we collected data which was analyzed by an outside source. And the results astounded us. We slowly expanded that program over the next decade to reach more and more families and train more and more providers as we got better at doing teleservice. And then when COVID hit, we were ready. So that was the lesson of side, and we really expanded it into the preschool and mainstream settings. And today we still do a lot. Lot of virtual mainstream services and we’ve worked with older and older children, so we’ve been doing it since 2011 with the babies and now we’ve been doing it for several years throughout the age span. Yeah. Well, that’s amazing because I know a lot of us got into telehealth services or a lot more clinics did right around the time COVID hit. But you guys certainly had a lot of experience already prior to all of that happening. So I know you’ve got some insight that you can certainly share about your experience there. So speaking of that, so with students and families that you help, could you share more about the role of caregiver coaching in this process? Yes, and this was one of those areas that we were so fortunate to be able to tap into our pre COVID experience. So when we were thrust into doing everything virtually, we had already really developed a caregiver coaching model. And I’ll use the term parent and caregiver. Changeably to mean anyone who’s really important in that child’s life. So with our younger children, we really believe that parents and caregivers are the child’s first and best teachers. That is core to our mission at Clarke. And the time that kids spend in a little session is maybe 30 minutes a week, maybe up to 2 hours a week. If they really are fortunate that’s tiny sliver of their day, they spend so many more hours with their parents and caregivers. So our goal is really to empower those who spend the most time with the child to integrate the strategies that the child needs to succeed in every aspect of daily life. And as kids get older, we’ve come to realize we do still need to coach parents and we also need to coach the students educational teams. So again, the student might have services on their IEP that they see 30, 60, 90 minutes a week. Really specialized teacher of the deaf or SLP, but that’s, again, a small sliver of their time. So we need to coach their teachers and support staff at the school as well as their parents to help with that carryover. Yeah, that makes a lot of sense. So you’re really setting them up to have that support that they need when you can’t be there with them during their full week. So you’re really helping them get those tools and put that support system in place. Yeah, that’s the goal. And we see it come to play in so many ways. For example, very recently I was doing a session with a toddler. Surprise, surprise, she had missed her nap and she wasn’t having it okay. And so she really was not participating very effectively in the session. We focused on parent coaching during that session and we were working on a strategy called auditory closure. And that’s. When we are singing a song or reading a familiar line in a book, and we pause to give the child a chance to fill in verbally from what they recognize with their audition. And so I was practicing that with mom and finding ways that she could do it during the week while the child had a meltdown. And then she sent me a beautiful video of her singing in the car, because we identified that she sits in the backseat in the car with her while the father drives every day on their daily routine. And she sent me a video of her singing a song in the car with her child, and she paused at every line, and that little girl filled in every single line of the song. And then she did it every day on both car rides, morning and afternoon. So even if we’re not hitting it with the child in the session, that Caregiver coach coaching allows the child to be exposed to the same goal all throughout the week. Yeah, that’s an amazing example of, you know. What you’re able to do to give the family those skills and support to help them to implement that into their unique situation. Yeah, that’s the goal. Right. Okay. And how do these students fare compared with their mainstream peers? That’s a great question, and we have spent a lot of time looking into this because it’s critical to us that if we’re providing these services, that we know they’re effective. And through our early intervention program with the Birth to Three Population, we conducted a ton of research, and we worked with an outside evaluator, the University of Massachusetts Donahue Institute, to analyze data over many years of that program, pre and post COVID. And so we were able to see, both qualitatively and quantitatively, the impact of T visits on practitioners, caregivers, and the students, and what we discovered and continue to discover. Is that when we looked at those children’s norm reference language scores so giving them a norm reference test just like we do to the kids who come see us in a center, we see them in the home and criterion reference auditory skills assessments that they scored on par with our kids receiving in person services at our Clark locations. So they were succeeding on just the same level. And we also found them to be extremely effective both for caregivers and for providers. We did a caregiver survey. Well, we did many over the years, but the most recent one, we had about 75 respondents, which is pretty good for a survey. And it was fascinating to see that over 90% of the parents rated Tvisits as effective or very, very effective in some of the areas we were most concerned about. For example, 100% of parents rated them as effective or very effective in developing. And maintaining a strong relationship with their provider, which is something people often worry about. Be able to do that. But again, well over 90% rated T visits effective or very effective at helping them learn to interact with their child, helping their child progress in their development, monitoring and tracking their child’s progress just overall outstanding results. And more recently, we’ve been focused on internal data collection for our mainstream students, our elementary through our high school students. And we’ve demonstrated that those students receiving mainstream services through Tvisits achieve their IEP goals and objectives on par with those receiving our in person services from our same ToDs and SLPs. And we found that school teams and families elect to continue new with teleservices even when in person services become available to them. Wow, well, that data really validates the approach. You guys have and what you’re doing. So that’s fantastic. Yeah, it exceeded my wildest expectations. I did it from the very beginning and I didn’t know what was going to happen in 2011. I thought, I mean, let’s give it a shot because we’ve got to reach more kids. But I was blown away that we succeed just as much as we did in person. Wow, that’s amazing. And we’ve already touched a little bit on this that you guys had a really big head start prior to COVID. But as we know, COVID brought changes about very quickly for a lot of people where in person services were fairly limited. And afterwards, as things are kind of going back to a more normal way of doing things, remote care services are still growing in popularity. Some people find that just they appreciate the flexibility, the convenience of these types of services. As a leader in this area, what would you like to share with our listeners or our viewers who may be considering incorporating a hybrid or remote service component to their care? Yeah, I would really encourage people to think about it seriously. There is a critical shortage of specialist providers in our country and throughout the world, but there’s a nationwide critical shortage of teachers of the deaf, and there’s a huge shortage of speech language pathologists who are specialized in listening and spoken language and have experience with children who are deaf and hard of hearing. So for many families, it’s not even a question because locally, there are no services accessible to them. So it’s really we call it a zip code lottery where your child happens to be born and CT visits as one of the most powerful tools in taking down the zip code lottery. So for families who feel like they have no options. Please look into teleservices because your child can succeed. Just like a child who lives around the corner from one of our Clark school campuses. They can and they do. And for parents who may have accessible services but are considering a different component, adding a component or switching to a component, it’s a different choice for every family. But these are very flexible service. We can work around things like childcare issues, family work schedules. I just enrolled a family who one of the parents works a night shift, and so they weren’t able to attend any of their child sessions and they felt left out. All of these unique circumstances that are barriers to access can be overcome with teleservice that’s it’s such great information to have, and you have the data that really supports that. So that’s fantastic. Okay. And you’ve shared already. Because of the data that you have, that this changes some of the myths people have around teleservices. Are there any other myths or misconceptions that you’ve encountered about what people think about with teleservices? There are so many there are so many myths and misconceptions about teleservices. And even personally, throughout the health and urgencies, I had really variable experiences with tele services in different facets of my life, different medical appointments and so forth. Some of it went great, some of it went terribly. So some people have had some really bad experiences, and from that come a lot of myths and misconceptions. Even though we’re familiar with using Zoom now, that doesn’t mean everyone likes it. One one of the biggest misconceptions I encounter is that people say you can’t do T visits with an inattentive or non compliant child. Or I think tele services are great, but not for my kid. Or I don’t think they’d work for him because he’s really behavioral. And that kills me. Because the fact is, as we discussed before, what happens outside of this session is what matters most. What happens inside that session almost doesn’t matter. We’re using a coaching model. It matters that the people spending the most time when the child are learning so that they can engage them outside of the session. Also, there are so many options to engage an inattentive or a non compliant child. We can follow the child’s lead. The provider and the caregiver can model the activity together to practice. The parent might do it independently and it might look so fun that the child comes and joins in. I’ve seen that happen a million times. Child is having a tantrum and I say, just play with the barn toy. Talk about what you’re doing. I’ll chat with you about it. Slowly, that child comes over and joins in. And then as we move into the older years with our little ones, we really don’t want them looking at the screen. I don’t want my babies looking at me. I want them looking at their mom or their dad. So I’m coaching them, and I’m not sharing doing screen shares or anything like that. But with our older kids, our school age kids, we have a huge toolkit of digital reinforced customizable games that incorporate the child’s very favorite things that can be extremely motivating for a child who may be considered, quote unquote, too inattentive for T visits. And we’ve found huge success with those tools. Yeah. So that’s one of, I would say, the biggest myth, I hear another huge one I hear is that every one needs the same materials. This is going to be hard because you don’t have the same things we have in the school. The family is going to have to go out and buy all the same toys as you. Absolutely. Absolutely not true. The fact is that with little ones, only a few essential materials are needed for the provider and for the family. I never ask a family to buy a single toy. I will use whatever is in the family’s home, and I’ll use whatever’s in a school, because that’s the child’s authentic life. So we need to work with whatever they have so it can actually be carried out throughout the day. And we’ve had parents comment, I thought, I’d have to go to a center. But I learned that our entire house is a speech therapy room, and that’s the goal. And then it’s for the providers. You need to have a book, and I think you need to have a baby doll. I often model with a baby doll, so I’ll hold a baby doll. And a book doesn’t have to be the same book as the family to show a parent. For example, if you hold your baby like this, that will give your baby the best auditory access because of. The distance of your mouth to their microphone on their hearing aid. Aside from that, you don’t really need to have the same things. And when children get older again, we have those digital materials that make it matter even less because you’re collaborating on the same screen. We can hand over screen controls and be writing on the same digital paper as an older student. Yeah. Well, that’s great. It sounds like you’re really meeting them where they are, using the tools that they have in their environment already, and then really supporting those families to help them with strategies that help their child succeed. Yes, that’s the goal. Meet every child and every family where they are and empower them from there. Okay. And you were alluding to some of the coaching methods that you use. Are there any other coaching methods that you’d like to share that you found helpful in working with families and students? Yes. A really underutilized strategy is. Asking the child or the parents or the teacher to take you on a toy tour. So we say, let’s use whatever’s in the family’s home. But you’re usually sitting in this like, one spot and you see the one thing. So a lot of times in an early session, I’ll say, let’s go on a tour of the house. And we’ll use that tour to identify where good places for us to set up. Oh, there’s a window unit in this room that is a big noise source. Maybe we could try sessions in a different room. Or maybe we could add in some materials that would make this a better acoustic environment, like bring in some throw pillows. And then you also spot things all over the place that would be great for therapy that the parent might not even have thought of as materials. Right. So you see what kind of toys they have, but you also say, oh, my gosh, look at this kitchen set up. You have a learning tower. We can do a session making a snack together. And same thing in a school. Schools have pretty. Material. So I’ll ask the child or the teacher, take me on a classroom tour. Even if you’re going to be doing the session elsewhere, then you know what they could grab for a session. So we say use what’s there. But most providers miss a step of learning what’s there. So that’s really helpful in coaching. And then we really try I to make a jointly made plan at the end of every session, whether that’s with an older child or with the parent and a younger child. The most critical aspect of coaching often happens at the end of the session, where I’m going to review, I’m going to recap what we did and what went really well, what might have been challenging, and decide with the parent. Not tell the parent, but decide with the parent or the teacher. What’s most important to you this week of our goals and how exactly are we going to do that? Okay. You want to work on listening to follow two step unrelated directions. Okay. When, when we’re getting dressed, when you’re getting when you’re setting the table for dinner and really make a specific plan. Another underutilized coaching strategy is always send an email recap. Always. That’s great. Yeah. Whether you’re working with an overwhelmed parent, a teacher who has 20 other kids, or a twelve year old student, it is not fair to expect any of them to remember all the things you talked about in a session. So I always send an email before the session and always after the session. Recapping. Hey, here’s what we did today. Bullet, bullet, bullet. Here’s the plan we made together for this week. Bullet, bullet, bullet. And I’ve had parents tell me we print it out and put it on the fridge every week so we don’t forget and. Yeah, that’s great. And that’s such a collaborative way to work with the families and then give them those bullet points like, okay, this is what we did. These are your take home assignments for this week. Yeah. Because we might cover 40 topics and they’re not going to remember them all and they shouldn’t work on them all. Yeah. And that makes it feel really manageable yeah. To give them that list. Okay. And are there any examples that you can share about advocacy or supporting students in learning self advocacy skills? Absolutely. This is a cornerstone of what we do, and we believe that advocacy begins at birth. And at birth when we’re getting those itty bitty babies, I’ve gotten babies as young as two weeks, starting two T visits after they got very quick ABR in there. And it starts with parent education. So a lot of our younger ones, we’re really going to be talking to the parent a lot about their child. Child’s diagnosis. They’re hearing technology questions. They may have things that come up because these families are going to a lot of appointments. And like I said, from a session, it’s really hard to keep track of everything. So they may have had an audiologist, provide amazing counseling to them about what connexin 26 is. But then they also saw geneticists and the ENT and a speech pathologist that day. And now they have no idea why their child has hearing loss because it’s just too much. So we’re someone they see every week, and we provide a lot of education. I always have on hand a few things that I can pull up. I always have a diagram of the ear ready to pull up. So when they’re like, well, I don’t know, does he have conductive hearing loss? Then I can show them. What is that? Right, so we start there. We start teaching the child very early on. My toddlers are working on telling. Their parents when their cochlear implant magnet comes off, if they need help putting it back on, breaking on, telling us when their batteries died and that kind of thing, all the way through our big kids. And something incredible that I saw this week was one of our amazing mainstream TVs providers shared with me a video of one of her high school students who they worked together, TOD and the student, to make a PowerPoint for the in service. There’s an in service given every year to the school staff about hearing loss. And this year, instead of my colleague doing it on her own, she made it with her high school student. And the high school student actually presented it to her own teachers virtually. Wow. And she spoke about her experience with listening fatigue, how it impacted her throughout her school day with such clarity, such confidence. And she was in charge of her own inservice. And I just thought, this is a kid who’s ready to go out into the world. If she goes to college, she will advocate to a professor. If she’s going into the workforce, she will advocate to an employer. So we really believe in making self advocacy part of every single session. Yeah. That’s so powerful. And it’s just empower ring to see somebody be able to communicate that information, sharing valuable information to their teachers, and then going forward having those skills. Yes. And honestly, she explained it better than I could because she was speaking to her real life yeah. And using phrases that were more meaningful to the school. She said, like, by C block. And I thought, I don’t know when that is, but the teachers are all nodding like, oh, yeah, she’s going to really struggle. By C block. All right, well, so we’ve covered a lot of topics here. Is there anything else we haven’t covered that you’d like to share with our viewers regarding your program or teleservices? I would just like to share that Clarke has been a trailblazer and a leader in the field of tele services since 2011, and it’s been my absolute honor to be along for the journey. I started off as a clue list provider who wasn’t sure they believed in this. I became a full fledged believer and supporter of tele services through my experiences and the research, and I’m just so honored to be in this position now where I can spread our teleservices nationally and even internationally. We really believe that Tvisit tele services are the key to systemic change increasing family engagement, to shifting professional practices, to an authentic coaching model, and to overcoming all the access barriers facing children who are deaf and hard of hearing. And their families. Yeah. Well, Nell, thank you so much for sharing all of this with us. And if any of our viewers would like to refer students or patients to your services, or if they’d just like to know more about your program, how can they get in touch with you? Absolutely. The best place to go for any of those things is our website, clarkeschools.org on that page and we’ll send you this for your show notes. On that page you’ll find family testimonials, some pictures of videos, information about our wide spectrum of Tvisit tele services. There’s a direct link to contact us and that will come straight to me. So you can email [email protected] or you can just click a link right on the website and you can email me if you have a referral, if you have a question or an ink worry, that’s what I’m here for, to answer anyone and everyone’s questions. I hear from school teams, from audiology teams, cochlear implant centers. Parents, everyone, anyone can refer someone for TVISIT tele services. In addition, my colleague in Clark’s mainstream department, Katie Jennings, and I recently presented a free webinar for families and that was recorded, and we’ll send it to you for the show notes. It’s recorded and it’s posted with some related resources for families as well as for professionals about teleservices. And that specific webinar is sought to help families understand the purpose, benefits and outcomes of T visits for children of all ages and understand various service delivery models. So that could provide you some great information, or it could be something very helpful to share with the family if you’re wanting them to consider tele services for their child. Great. Yeah. So we’ll be sure to share those resources with our viewers. And once again, thank you so much for sharing all of this with us today and for our viewers, thanks for tuning in and. And we hope that you learned something about telehealth services today. Thanks so much for having me. It was a pleasure..