empowEAR Audiology Podcast

Listen to empowEAR Audiology Podcasts

empowEAR Audiology

Communication is connecting. Join Dr. Carrie Spangler, a passionate audiologist with a personal hearing journey, as she interviews guests who are navigating their own professional or personal journey in the hearing loss world. If you want to be empowEARed or just want to hear some great hearing and listening advice, this podcast is for you!

Meet our Podcaster

Carrie Spangler

Audiologist, Mother, Wife, Advocate, Podcaster

About Me

Carrie Spangler, Au.D, CCC-A, is a dedicated professional in the field of educational audiology with over 20 years of experience. She also has a passionate personal journey of living successfully with hearing loss in this vibrant hearing world. Dr. Spangler has turned what many view as a “disability” into an “ability”.

In November 2019, she began her cochlear implant journey, which you can follow at  hearingspanglish.blog. Empowering and helping others with hearing loss, families, and professionals is at the core of her daily work.

Dr. Spangler has numerous publications and has presented on topics related to educational audiology, advocacy, and peer supports at the state, national, and international levels. Dr. Spangler is also an active member of professional and service organizations.

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empowEAR Audiology Podcast Reviews

Ben Thompson, AuD
Host of the Pure

I recommend this podcast! Great podcast about hearing conditions and audiology!

Father of a child with hearing loss

I'm a parent of a child with hearing loss. This is an extremely helpful podcast to learn from and be a good parent to my daughter.

Listening Fun
Facebook empowEAR Audiology Group

I had so much fun with Carrie on her EmpowEAR Audiology podcast! We talked about itinerant teachers of the deaf and how we work to support our students with hearing loss! This was my first time being a  podcast guest!! I feel like I could talk about being a TOD indefinitely so it was a really fun experience. Go check it out on Apple podcasts! 

empowEAR Audiology Podcast Transcripts

Episode 56: empowEAR Audiology - Dr. Lindsey Tubaugh

Announcer: [00:00:00] Welcome to episode 56 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. I am really excited today to have a special guest with me. I have Dr. Lindsey Tubaugh, and I know I said that wrong. Tubaugh Thank you. Um, with me today and she has been a practicing audiologist for over 20 years, working with both adults and children in a wide variety of clinical settings. She has co-founded the Little Heroes Pediatric Hearing clinic, where she specializes in tinnitus and sound sensitivity disorders, including loudness, hyperacusis, Annoyance Hyperacusis, Misophonia and Fear Hyperacusis and Phonophobia, which we're going to talk about today. Her passion is helping patients understand that tinnitus and sound sensitivities, while sometimes debilitating, can be managed with careful testing and treatment, patients can live their best lives. She has become a Rapid Transformational therapist to utilize hypnosis and further assist patients with tinnitus and sound sensitivity struggles. She created the Sound Immunity Program, which is an online coaching program for those struggling with sound sensitivities. So, Lindsey, thank you. Welcome to the EmpowEAR Podcast. Oh, thank.

Lindsey: [00:02:03] You so much for having me. I'm so excited. I love talking about this. So I'm I can't wait to just dig in. Yes.

Carrie: [00:02:12] And that's exactly what we're going to do today. But before we dig into that, every guest that I have that is an audiologist because it's such a unique and fun field. I always like to find out, how did you actually get into audiology? Do you have a story behind it?

Lindsey: [00:02:28] You know, I feel like my story is very similar to others stories in that when I was in college, I was going into special education and then I learned more about speech language pathology. So I switched majors to to speech language pathology. And as an undergrad, you take both audiology courses and speech pathology courses. And I just loved the audiology courses so much more. And so it just kind of morphed. And then, you know, at the end I was like, I'm not I think I would have been happy being a speech pathologist, but audiologist audiology just called to me. So that's how I ended up here and I couldn't be happier.

Carrie: [00:03:08] Well, good. I know. I feel like a lot of people have that pathway too. Yeah. Yes. So can you just share a little bit, too, about your professional background? Because I know that you have co-founded Little Heroes, but where did you I know you started out somewhere before that.

Lindsey: [00:03:27] Yeah. So I started out, um, way back when you used to get a master's degree. That's what. That's me, too. And right after I got my master's degree, I got hired on in Iowa to for private practice. And so I ran two offices in southeast Iowa, mostly for adults. We did get an occasional child here and there, but it really was mostly an adult private practice dispensing clinic. And I worked there in addition to some ENT work PRN, um, here and there for about ten years. I did that before moving to Utah. And I.

Lindsey: [00:04:14] Really want.

Lindsey: [00:04:15] To see. Um, so I really wanted to find something that fit my personality a little bit better. So a job came open in Salt Lake City and for a newborn hearing screening program. That needed to be needed, an audiologist, you know, to do the testing and the follow up. And so I interviewed for that position and I got that position and I worked doing that for about three years before transferring to the children's hospital here in Salt Lake City. And I learned so much about pediatric audiology and met just the most amazing people when I worked at the at the pediatric hospital here. And I really loved it. I, I moved into a management position over at the audiology Department at the hospital. And I was doing that for about three and a half years and then realized that I really missed patients. I really missed missed patient care and a lot of the things that I was interested in, like misophonia, um, weren't things that were very conducive to, to, to a hospital type setting. And so one of my best friends and I decided to open our own practice and specialize in these things we do any the only thing we don't do in our pediatric hearing clinic in Layton, Utah, is vestibular testing. But otherwise we are a full clinic offering all services to pediatrics. We also see adults for our specialties, which is auditory processing disorders for Dr. JJ Wicker and then sound sensitivities and tinnitus for myself.

Carrie: [00:05:59] Oh wow, that sounds like an amazing way to kind of get out of a management position, but then to be able to use like the skills and your passion in a different way.

Lindsey: [00:06:10] Exactly. Exactly. Yeah.

Carrie: [00:06:13] Well, um, someday I would love to come visit you guys. Oh, we'd love to have you. Yes, But anyways, I know I was so excited. Dr. Gail Whitelaw had recommended that I reach out to you because she's like, she has so much knowledge in the area of Misophonia. And so just in the setting that I'm in and educational audiology, I've run into a couple of students that definitely have been diagnosed or kind of have the characteristics of Misophonia. So I thought this would be a great topic for the EmpowerEAR Audiology podcast because we don't talk about it enough and I would love to have our listeners have a little bit more information. So I think the first question is I think people pronounce this in different ways, right? So the correct way.

Lindsey: [00:07:09] Misophonia Okay. So this has this is actually a bigger question than I think most people even realize because some people say misophonia, some people say Misophonia. And to me, I don't really care how they pronounce it or I don't. I say, Misophonia, Um, but you'll hear it both ways and it's kind of like with tinnitus. You'll hear some people say tinnitus and some people say tinnitus. And people have different opinions on that. But the bigger question to me is, is should we be referring to this as misophonia or should we be referring to this as annoyance hyperacusis And this is something that I never even knew was a thing until I went to, um, Iowa to their tinnitus. Every year they have a tinnitus conference and that's where they talk about how some people just get really, really upset by the term misophonia and they really feel that it should be called annoyance hyperacusis So regardless of if you hear the term Misophonia or Misophonia or annoyance Hyperacusis it's the same thing. And I think that that's important. So I try to be careful with my wording with other professionals. Um, most people know it as misophonia That is the most common thing you get on TikTok. They're talking about Misophonia. You get, you know, social media. It's Misophonia you talk to psychologists, it's misophonia. But there are some audiologists for good reason, who believe that because it is a type of hyperacusis and because that is how you code it, that it is, it should fall under that hyperacusis umbrella and should be termed annoyance hyperacusis. So you'll see me utilizing those terms kind of interchangeably. And I'm always sure to tell patients and families that that they might see it in two different ways.

Carrie: [00:09:05] Okay, well, they learned something already, right? As far as terminology. And I thought that was going to be a simple question, but it was obviously yeah, that was that's good to know. So I guess we should define like what is misophonia And I think we and can is it a different definition than Hyperacusis? Then.

Lindsey: [00:09:30] Yeah, well, it definitely is a different it is a it is different than hyperacusis as we know it. So. A lot of audiologists think hyperacusis is the loudness hyperacusis. So really there are four different types of hyperacusis. There's loudness hyperacusis as most audiologists know it by, right? So people who are sensitive to moderately loud sounds or even relatively soft sounds, they're so sensitive to those where other people are less sensitive or have kind of a normal sensitivity that's considered loudness. Hyperacusis So when you're testing LDLs and uncomfortable levels of loudness, that's what we're talking about is the the. Loudness hyperacusis. Then there is pain Hyperacusis. Which is when a sound elicits a physical pain in the ears. Okay, so this is and it's very specific, almost like a this is a horrible imagery, but but like a pencil being stabbed into the ear. And for that that's a medical referral. So when I see the pain hyperacusis, I'm like, okay, I'm that's not my specialty. I'm going to send you off, you know, to ENT because usually they need to take care of that in a different way. And they have found that with pain hyperacusis sound therapy is less effective. So they're coming up, they're, they're still researching it and coming up with effective treatments. Then you have fear hyperacusis, which we typically know it as Phonophobia They're interchangeable and they mean basically the same thing. They're it's just a different way of using the terminology and then annoyance hyperacusis, of course, is Misophonia.

Carrie: [00:11:16] Okay. Oh wow. And so yeah, there's I didn't know there was four types of hyperacusis too. So being kind of, I guess in a different realm of audiology, sometimes you learn different things along the way, But so kind of digging a little deeper into the topic of, of Misophonia two is what is the prevalence of the individuals that have misophonia.

Lindsey: [00:11:45] So there is a huge if you look at the literature, there's a huge range that is is listed anywhere from 5% to 20% to 79% of the population has some type of misophonia. And when you think about that, this is why I think there's such a big range, because you think about sounds that you don't like. And a good example is being bored. So that bothers almost everybody. I've very rarely ran into someone that's like, get like a high off of that sound, you know, it's the sound that everybody's like, Oh, I don't like that sound. It hurts in my body. It makes me feel frustrated. And that's a good example of Misophonia. Now, does how often does that happen, though? It really doesn't happen that often. How much does it affect your life? It doesn't really affect your life that much. And so unless you know you're in the classroom and maybe it does affect you that much. But, you know, I think the the prevalence is pretty close to about 6% of the population, in my opinion. When you're talking about severe misophonia that needs to be treated because similar to tinnitus, when we talk about tinnitus, someone can have tinnitus, but it's not affecting their life in a negative way this is there, Misophonia. You can have misophonia most people have sounds that they don't like or sounds that make them angry. But if they don't, if they don't hear that sound very often, then it's not necessarily something that they need to get treated right away. And then you have those where it's affecting just every every second of every day. And those are the patients that we really need to help and be there for.

Carrie: [00:13:38] Yeah, which I think is a great question. My next question was like, who is there kind of a, I guess a population that's typically affected more severely with Misophonia?

Lindsey: [00:13:50] Yeah. So that's a very good that's a very good question. And honestly, anybody, anybody can be affected by misophonia anybody can get it. So it's not just one population. Um, I've seen it, I've seen it all. I've seen it from, you know, a two year old to, you know, geriatric. It can happen to anyone, even without any other comorbid conditions. However, there are some conditions that we see a little bit more prevalence in, and that includes any any person that has any type of sensory disorder or depression and anxiety or who has the HSP personality trait, any type of neuro atypical diagnoses. We will often see some sort of sound sensitivity, whether that is loudness hyperacusis, the misophonia or a combination. A lot of times both another population that that kind of took us by surprise that we didn't really think about when we opened this clinic is a lot of the patients that Dr. JJ Wicker sees for auditory processing disorder end up coming to me to for sound sensitivity disorder. So we are really interested in doing some research to, to see. See if there is more of a prevalence for those that have auditory processing disorder to also have these sound sensitivity disorders as well.

Carrie: [00:15:23] Mm hm. Wow, That's interesting to to have that kind of connection. But it makes sense as far as having difficulty with auditory processing and then having some other auditory, you know, needs too. Yeah. So kind of getting into maybe a little bit more about the Misophonia, how what happens when someone has severe misophonia and what are their experiences typically?

Lindsey: [00:15:49] Okay. That that is the question that is such that's the big question. And you know you have your subjective what is the patient going through? What is the person going through when they have misophonia? And then you have the more objective like what is happening in the brain, in the body when you have misophonia so subjectively. Um, so I'll just give you a few examples of, of, of the way that, so.

Carrie: [00:16:14] I think examples are great. Yeah.

Lindsey: [00:16:16] Yeah. So I have one client who said that whenever she hears a specific sound, she, she says it feels like there's a horrible itch in her brain and she just can't scratch it. And I had another patient who every time he heard someone sniffle, he said he wanted to just crawl out of his skin. I've heard. I just want to pull my hair out. I just want to choke the person making that sound. Um, and a lot of times you will. You know, one of the questions I always ask patients is, do you have any thoughts of self-harm? Do you have any thoughts of harming others? And I think that as a profession, those are questions that we need to be very open to asking. And a lot of times with patients with Misophonia, what I found is they'll say, Yeah, in the moment I have these feelings, I want to hurt that person or I want to because it's this anger response in the body. It's this fight or flight response in the body and it's fight that comes out in some people they don't most of the time they don't act on it. They have the thought. And then when they when their central nervous system calms down after they've been exposed, they're able to, you know, be okay. But there is there there are patients who will scratch themselves, you know, when they or kind of clench their fists and and dig their fingers into their their hands or bang their head against the wall because it's it's so difficult to cope with what's going on on the inside of their head that they they do something on the outside to try to I don't know the right like.

Carrie: [00:17:59] Manage it or.

Lindsey: [00:18:00] Kind of Yeah. Kind of cope with it in that way. Um, so definitely that's what is subjectively going on. There is a physiological response. So a lot of times there is a tightening or a pain somewhere in the body. A lot of times it's like a tightness in the chest or the neck muscles tighten up. But I have had patients who their feet, their feet like clench up when whenever they hear that sound or their back. But it's very interesting when I ask people, when you hear that sound, do you get a pain in your body? Because, you know, of course we're looking for the pain in the ears. But a lot of times they'll say, Oh, it hurts. And I'll say, Where does it hurt? And they won't say it hurts in their ears. Most of the time they'll say, It hurts in my head, it hurts in my chest, it hurts in my belly, it hurts in my legs. And that's really interesting. So you have that with most patients. You have that feeling that they're getting physically in their body and then you have this emotion that they are getting in response to the sound. So there is they've done imaging studies on what happens to someone when they are triggered with their trigger sound. And there are at least seven different areas of the brain that light up when they when they've mapped this out. And all of those areas are attached to emotional regulation. And so it's very much a system where the auditory processing center and the emotion regulating system in the brain and physiological processes in the body are all connected.

Lindsey: [00:19:41] And so I think that really. That brings out the next question. Who should be treating this? Because it's a psychological thing. It's a physical thing. It is an auditory thing. So a lot of times we see occupational therapists, um, anybody in the mental health care field and then audiologists. And what I noticed when I was at the children's hospital was we were part of the rehab department and I would have occupational therapists come up to me all the time and they'd say, I just got a I just got a referral for Misophonia. I have no idea how to treat this. And and I have seen actually a psychologist in my office for her misophonia and she's like, I don't know how to treat this, but people come to us asking and we don't know how to treat it. And so there definitely are people who specialize in it. There are occupational therapists that specialize in it. There are audiologists that specialize in it, and there are mental health care professionals that specialize in it. And sometimes the case is so severe that you really need a combination of all three. Sometimes it can be handled by one. Sometimes you really need a combination of all three because all of those things need to be addressed in order to to really get that misophonia under control.

Carrie: [00:21:05] Yeah, I mean, especially when you have all those different experiences having that like inter-professional relationships with people that can kind of help out with whether it's a more sensory or a more auditory or more kind of, you know, physical things going on too right now.

Lindsey: [00:21:26] And unfortunately, when what we have seen is that when somebody who doesn't specialize in it or doesn't know exactly how to treat it, when they when they're well, well, excuse me, well meaning clinicians, they can treat it inappropriately and it can actually make the problem worse. So two of the ways that I've seen this is if a child sees a therapist and the therapist plays a say it's baby crying that they're reacting to. So the therapist plays the baby crying while the child is swinging on a swing. Okay? And they think, okay, so we're pairing this negative stimuli to this pleasant activity and, you know, that doesn't work. That's exposure therapy.

Carrie: [00:22:16] Yeah.

Lindsey: [00:22:17] And and it doesn't work because what's happening this misophonia misophonia is a conditioned response. So think back to Pavlov's dogs. We all, most of us remember Pavlov's dogs, right? So Pavlov had these dogs. He'd ring a bell, give him a steak or whatever, and then he found that they would start to salivate just from hearing the bell. That's how I kind of explained to people how this conditioned response to sound is. So you have this sound that at some point in time. Maybe trauma, maybe something else. The brain put it together as something that it needed to fear or to fight. Okay, so it got the limbic system involved. It got our autonomic nervous system involved. And so whenever that sound went off, just like Pavlov's dogs with the bell, the anger response or the the rage response or the anxiety response and then that feeling in the body, it went off just like the salivating of the dogs. Now, with treatment, I do just the opposite. So I with sound therapy, I deconditioned the response because what we also learn from Pavlov's dogs is eventually those dogs stop salivating after so long of not having that stimulus. So when I do active sound therapy, which I which I got from Jastreboff, that's what he recommended. Um, my goal is to present the sound in very small, very, very small chunks of time.

Lindsey: [00:23:56] Again, while they're doing something that they're happy doing, you know, having a good time playing a video game, anything. And then just a tiny, small chunk, very brief of the stimulus, but it's not quite like exposure therapy because we're trying to get it for for the patient to hear the sound without going to the fight or flight response without triggering. And by doing that, you can decondition the response in the body and in the brain to that sound. And even for my patients who have multiple sounds that they're dealing with, what I've noticed is that a lot of times if we can tackle the one that is is the most difficult for them or that is affecting their life the most, then a lot of times it will it will kind of transfer to to how they relate to other sounds as well. Sometimes it doesn't and we have to tackle each one at a time. But a lot of times, because our brain is so crazy and amazing and does all of these things that it thinks is good for us or thinks it's helping us and it's actually hurting us and making life harder for us, we just have to teach our brain what it is we want and how to get that. So yeah, a really long answer to your question.

Carrie: [00:25:13] No, that was a good one though. But I guess it kind of gets me back to another question. You talked about like, you know, your example of of the baby crying, for example, being a trigger. So what are some of the common triggers that you see when people come in for Misophonia?

Lindsey: [00:25:32] So there are definitely very common ones that people can relate to. Sniffling is a really common one. Um, coughing, mouth noises, eating. And what's interesting with Misophonia is that you can have the same physical response. Whether so if chewing, let's say chewing is the trigger, somebody could when they hear someone chewing, they trigger sets off their fight or flight response in their brain. They feel those really difficult feelings. But we also have found that even if they can't hear the sound, but they can just see it happening that they will still trigger. And so in my so when I'm doing treatments like this, I always make sure that when we're doing the active sound therapy, it's actually a video. So there's a visual and an auditory component to kind of help treat that. Um, I know that wasn't your question and now I've forgotten what your question was.

Carrie: [00:26:32] Yeah, no, we were just talking about the different triggers along the way, like, so you were like a lot of eating and like, chewing and sniffling.

Lindsey: [00:26:41] Yeah. So there's visual triggers and there's auditory triggers. It usually starts with auditory triggers and then it can be visual, it can be it can be a trigger just to one person, just to so even the sound that one person makes. But then if another person makes that sound, it's not triggering to them. Um, so chewing, sniffling, gross bodily noises, burping, those kind of things, whistling, um, those are all very common ones, but it really can be anything. And, and we've seen some really interesting ones. So baby crying is another one. And then you kind of have to, to weed out, okay, how much of this is loudness hyperacusis and how much is of this is the annoyance hyperacusis. Because you treat those two things differently and sometimes it's both. They've got the loudness hyperacusis and they've got the the misophonia or the annoyance h yperacusis So you start treating the, the loudness hyperacusis first and then you move into the annoyance Hyperacusis or the Misophonia. But we have had patients who have had very difficult, um. Triggers, such as I have one little guy and we're working with him because his mom's voice is a trigger. Now, that's a really hard thing. Your mom's voice and you're a child, and every time you hear your mom's voice, you trigger, um. Laughter So laughter is, you know, if that's your if that's your child's trigger, if that's your trigger, that's really hard.

Lindsey: [00:28:12] And that is definitely taking away from not only the patient's quality of life, but also those that are living with that patient and constantly walking on eggshells. I had one mom reach out to me who was pregnant and her daughter was her trigger was a baby crying. And they were terrified. They were terrified of this baby coming because their daughter was so reactive to and physically aggressive towards hearing a baby cry. So this is when you're talking about the severity and who should be treated and when. It's just kind of a normal phenomenon in our brain with the chalkboard. That's how that's kind of how you determine, well, who should be treated and to what lengths and in what order. All of that. And that's where questionnaires really come into play and getting as much information about the case as possible, trying to find out all the triggers. Is it just one trigger? Um, and is it only with one person? Those are usually the easiest ones to take care of. Um, but it, it really can be any sight or sound. And we found that a lot of times there is some form of trauma that kind of preceded this, this conditioned response. We can't always we can't always say that though. We can't always narrow it down to some kind of trauma.

Lindsey: [00:29:39] Now, as you stated, I ended up getting becoming a hypnotist, mostly for tinnitus. As I read that hypnotism could be helpful for tinnitus patients, but I have found it extremely helpful for Misophonia patients. And what's interesting is the when we do regression, they will have circumstances where they have heard the sound like sniffling and had a very strong emotion, like fear or sadness or, you know, being scared of the situation. And that's what, you know, it's a perfect combination, combination for the brain to be like, oh, we need to keep you safe when, you know, our subconscious brain is amazing and, you know, if you. So I had a patient who regressed back to a scene where he almost drowned and he his parents got him out and everybody was crying and he was scared and sniffling. And then he got yelled at because, you know, when you're a parent, you're scared. And it's like instead of like, comforting, like you comfort, but you're also like, what did you do that? And for a child, the brain is like, oh, okay, I hear that sound sniffling and I'm feeling this horrible feeling and I wasn't safe. And so your brain makes this this connection. And so it's very interesting. And that is that's definitely I'm sorry, I went on a tangent on that.

Lindsey: [00:31:10] But but definitely what I've seen in a lot of people and trauma means can can be big or small. I've I've had patients that they knew exactly like they were abused as a child and their dad yelled. And so whenever they hear a man yell, they go into the fight or flight. I mean, that is very obvious. But trauma to a child or even to an adult can be just anything that's very, very difficult, that has an emotional component to it. And then you add a sound component to it. And then when it gets all mixed together in the subconscious mind, then you get this conditioned response. And the more you hear it and the more you get that, that that response, the stronger it gets, which is why the exposure therapy is not great, because all you're doing is strengthening that conditioned response, because they may be swinging on the swing, but they're hearing that over and over again, over and over again. And they're they're responding. They're just in this constant state of of fear or fight or, you know, just the survival mode. So it's really when you're treating misophonia, it's really learning to treat a lot of different things at once. You are using sound therapy to help the brain understand. Passive sound therapy helps the brain understand that sound is safe and that some sounds we can block out.

Lindsey: [00:32:35] Active sound therapy is giving little chunks of the sound. That's the trigger. Um, where they don't actually trigger so that the brain starts to learn. Oh, I don't. Need trigger when I hear this sound or see this sight. Um, and then as time goes on, then you can increase that. So the point of misophonia training or therapy is, in my opinion, is to not have the patient ever trigger when they're doing their, their practices. And the biggest sign of success or predictor of success that I've seen in my patients is the patients who really put in the work. And I think this is one thing that is a deterrent for some patients to seek help is it takes a while. It takes kind of a while to to really retrain your brain and to learn new things. And, you know, combine that with cognitive behavioral therapy and combine that with strategies to regulate the central nervous system when you're, you know, your limbic system has gone haywire and you're in that flight or fight response and you need to learn how to kind of tone, you know, tone that down, so to speak. That's a very good way of saying it. But, um, so it's this very complex combination of things that can really help a person, but it does take work on their part. It does.

Lindsey: [00:34:09] Take daily. The.

Carrie: [00:34:12] Yeah. No. So I was going to ask you, though, Lindsay, like kind of going back to diagnosis, do you have a specific like test battery or is it more going through like what you said, deeper dives into questionnaires and case history? How how does that work? Yeah.

Lindsey: [00:34:32] So right now there is no real gold standard for making a diagnosis and there is no true diagnosis of misophonia yet, although I really think that will change. We've so much research has come out even in just the last year. This has really been a hot topic in especially in the psychology world, but there is no gold standard for how to test for it or diagnose it. However, there are some very, very good questionnaires that really can get to the heart of the feelings that are associated with certain sounds, both physical and emotional, and how severe it is. So even though there's not even really a very good way to say like, you know, with hearing loss, we're used to saying mild, moderate, severe, profound. And even with tinnitus, we have questionnaires that will kind of help us label it as such. Misophonia is a little bit more tricky. However, it's obvious when somebody needs help, you know, and it's obvious when it's severe. Um, so there are a lot of great questionnaires. I have my favorites. Um, but, and they're all accessible online and it's a great way to see, you know, they, they ask all the questions. The Sussex Misophonia scale is one of my favorites, but everybody kind of has a favorite who works in with this, and it's not the only one I use. Um, but I, but I like that one because it does have different, you know, subscales for emotional impact and avoidance and repulsion and, and things like that and pain. Um, another thing I always do LDL testing on my patients that come in, even for Misophonia, I always do an audiogram.

Lindsey: [00:36:20] I include LDL testing because so often we don't know that they actually have loudness hyperacusis in addition to the the misophonia. And when I have a patient that has both, most of the time I will treat the loudness hyperacusis before starting treatment on the Misophonia it's been a little bit more effective for my my practice to do it in that order. There are times when the misophonia is so destructive and so harmful that that we actually try to tackle that first. But that is one thing that I always do. You know, I'm I'm an audiologist at heart. And so I want to see what what else is going on in their the way their brain is processing loud sounds as well as how their brain is processing sounds they don't like. And a lot of times you get patients that come in and they'll say, you know, whenever I hear a helicopter, I get really angry. Okay, well, that's two different things that it could be that could be loudness hyperacusis because it might be the loudness that's just so loud. And then they get angry. But most likely it's both. They they have they're having a response to a loud sound and it's a very negative, physical, emotional response. And so, so the triggers helicopter. But they've got both. It's both of those things happening. So we kind of combine the therapies that way so that we can address both.

Lindsey: [00:37:52] Jeez, that one happened.

Lindsey: [00:37:53] That's really interesting is once you do overcome the misophonia the trigger. Um, let me give you an example. I had a patient who we, we got through. It took 12 weeks. And for most neurotypical people, 12 weeks is about average. Okay. That's a that's quite a while to everyday work practice something that. And what I tell patients is that 12 weeks is going to go by anyway, so you might as well improve your life in that 12 weeks. But I did have one patient. His trigger was hearing mouth noises through a microphone. So when you think I'm not going to make it the sound now because that would just anybody who may have that have misophonia would be triggered. And I hate doing that. Um, but we conquered that for him. He, he, he was very religious, a little cute. Eight year old kid, loved going to church, but he would just, just sit with his ears covered just in fear of that sound. And we got that sound. He overcame the sound so it didn't trigger him. It didn't give him the feeling of anger or rage or any of that when he heard it. But what happened? What was underlying that was a phonophobia. So he was going into fight or flight before, just out of fear of being in the presence of that sound, even though he'd overcome.

Lindsey: [00:39:23] That.

Lindsey: [00:39:24] Taking a trigger. So then we worked with the Phonophobia, the fear of being in the presence of that sound. And now he's great. He's great. So it's really just kind of this puzzle and unraveling this mystery. And every patient is different. And I love that. I love that. You know, it's it's you have to be very creative and think pediatric audiologists especially know that you have to be creative. And that's part of the fun. And that's part of the anxiety of it as well, is, you know, when something doesn't work and it's worked on so many other people, you have to you have to be like, okay, we're going to find something that works and we're going to figure this out. And you do. And there's so.

Lindsey: [00:40:03] Many. He did approach the patient who has who has misophonia that.

Lindsey: [00:40:12] There's always a solution. I feel that's that's one of my mottos is everything is figureoutable, right?

Carrie: [00:40:18] No, that's a great motto. But I know earlier we were kind of talking about, you know, there's a lot of not a lot, I should say a few OTS and a few psychologists and a few audiologists that really kind of specialize in misophonia. And just I know in our area, like the person that I was working with, their family was like, we've called around to like psychologists and different places. And we mentioned, you know, misophonia and they don't even know what we're talking about. Yeah. So I guess my question to you is I know you have like an online program, but what can people do if they don't have anyone that kind of specializes in there? Or do you have ways that people like to cope with everyday life?

Lindsey: [00:41:10] Well, they're definitely they can definitely look up ways to regulate the autonomic nervous system, but that is a coping technique that's not going to make the misophonia go away. So absolutely, I encourage, you know, researching different things that can help regulate the nervous system. And a lot of there's there's so much information out there on how to do that on YouTube, on Pinterest. You know, there are a lot of different techniques that you can do that are research based to help calm the central nervous system down after you've been triggered. So it's it's more of a bandaid than a fix. Right? But those are those are techniques I also teach my patients as we're going through those are also very important. And so if you're someone who has misophonia and you don't know where to go, there is nobody in your area and you're just trying to get through your day. Then definitely looking at ways to regulate your nervous system and trying different ways. I when I see my patients, I have give them 20 different types of ways that they can regulate their nervous system if they get triggered and they'll like some of them and they'll hate some some of them and all everybody's different. And that's why I give them like this huge bucket full of things that they can use.

Lindsey: [00:42:35] And we practice it in the clinic or, or virtually, if we're doing it virtually so that they can really have a tool to draw on in those moments when things are just really, really hard. And you know, it's really, really hard on, on our bodies, on our when our nervous system goes into that state and we can't get out of it, it's it's very traumatizing to our bodies. And and so that's my best recommendation as far as how to cope Now understanding that you really that's not going to eliminate the conditioned response in the the subconscious mind, in the brain, in the amygdala. You really have to to have somebody that knows what they're talking about. And this is this is where this is this is where the trouble lies. Right. Who knows what they're talking about? Yeah. And how do you find them? And this is this is why I created the online platform that I have, the sound immunity program. It's a coaching program. So, you know, audiologists know we can't we can't do telehealth. It's not a thing yet. Yeah. In most places. And so what I, what I, I got this idea from seeing other audiologists who had created tinnitus coaching programs and it allows a little bit more flexibility for people from all over the world to connect with you virtually to get coaching through their experience and to get guidance on on how to to get through this and and move past this.

Lindsey: [00:44:23] Now, of course, any type of program like that, it's a coaching program. You can't do any diagnostic testing. You can't make an official diagnosis. But there's still a lot that you can do for these people. And I now have patients from all over the world in all different time zones, and it's incredible. And I've also, um, created an online program that's kind of a self-paced program that has everything. So somebody who, you know, maybe is uncomfortable with the one on one face to face type thing, Um, we'll, you know, they can go through a course, a 12 week course, but they can do it at their own pace and then always go back to it and have that. And I felt that that was really important to to create because of exactly what you said. There's just not very many people that understand. And if you get someone that says, well, just wear headphones. Now you're going to make it worse.

Carrie: [00:45:20] And that was actually one of my next questions. I'm like headphones and no headphones. I think it um, yeah, it probably depends, but and where they're at in that process. But I know there's a lot of different answers for that.

Lindsey: [00:45:34] There are a lot of different answers and you know, headphones have their place. Noise reduction headphones have they have their place. And when I see so I've had patients or clients that come to me and they've worn headphones noise canceling headphones for seven years because their ABA therapist told them that that's what they needed to do to just to get through life, right? And so by the time they come to me, they have misophonia and such severe hyperacusis because they haven't gone anywhere in the world without these noise canceling headphones. And there is a way to still wear headphones. Noise canceling headphones without getting as much auditory deprivation and that is get headphones that will stream some sound in. So if you're going outside, so so if you know for these patients, I'm never going to say, nope, stop wearing your headphones because they will never be able. I mean, that's just it's that's too much. That's you can't do that. And so what I'll typically say is, okay, we're going to just try to reduce it like just a tiny little bit. We'll try, you know, try going, you know, holding the headphones out for ten seconds and then put them back, you know, and we start very, very slow. But another thing is, if you can stream some very soft white noise, pink noise, red noise, even some nature sounds, then at least their auditory system is getting, you know, a more broad range of stimulation and we're getting less of that auditory deprivation. Now for parents who, you know, they say, can we just use them for the fireworks or for. Of course, Yes. You know, you're not going to do damage. In fact, it's it's good to use them for those situations anytime, you know.

Lindsey: [00:47:24] But if you know, if it's just like a you're going to the kids museum and you're not far enough along in your therapy program to really be able to do it without your headphones, then wear your headphones if you can stream something to them even better. But I mean, the whole point is that we want to improve the quality of people's lives and so we don't want to take anything away from them. And when you're working with Misophonia and Hyperacusis and Phonophobia, it's a slow process and you have to be okay with that. If you're a professional that wants instant results or if you're a patient that wants instant results, you know, there is no instant thing that's just going to that's just going to help. And I wish there was. And you'll see ads on Facebook for things that say, if you have misophonia, this is what you need. And they they do have their place, right? Some of those things do have their place. But in reality, you want to avoid the use of headphones for noise cancellation purposes only as much as possible. And if you do need to use them, try to stream something to them. And there are a lot of great products on the market right now. Apple has some, Bose has some where you can still hear what's on the outside world, but then stream something that can kind of help your central nervous system. And then if there's a sound that's very bothersome, you can push a button and it can activate the noise reduction so that all you're hearing is the sound that's streaming, you know, to your ears. And so that's typically what I recommend to my patients who have worn headphones for a long time.

Carrie: [00:49:08] Okay. Yeah. Because I think being in the school system, especially working with some neurodiverse individuals too, there's a lot of headphones that are happening in a classroom and not that I've done any kind of misophonia questionnaires or anything with these kids, but it makes me think that they probably do have triggers. Yeah, absolutely sounds.

Lindsey: [00:49:33] And that's what's so hard is that as audiologists, we we know most of us know that by depriving the auditory system of sound, you're going to make hyperacusis loudness hyperacusis so much worse. I mean, it's, it's it's really it sounds counterintuitive, but when I see when I see parents or I'm talking to parents about these headphones being used all the time, you know, I say, really what we want to do is try to enrich the environment with with pleasant sound for as much of the time as we can. We don't want to deprive the ear of that that auditory system of hearing sound because then when you do your central nervous. System thinks this isn't right, this isn't safe, and then that's. So you're more likely to go into that fight flight freeze response. And that's just not what we want. We want just the opposite. So it seems counterintuitive to a lot of families, but we really, instead of taking sounds away in order to help the auditory system and the subconscious mind sort of get over this, we we want to put sounds in, put good sounds in and and strengthen the auditory system.

Carrie: [00:50:51] Yeah, that that's great. So overall, I feel like there's that Misophonia is definitely not cookie cutter at all. No. So and every individual is so different. So really like taking a deep dive into a questionnaire and case history and finding out more about what that patient is experiencing. And then like you said, it's a slow process that takes a long time and you can't expect to have quick results with it. Yeah. Is that thing so kind of wrapping up, I thought first, um, a couple of things. Did I miss anything like important as far as the question goes that you might want to think like our audience, you know, that kind of not to no pun intended, but like, it triggered your mind. Yeah. Did I miss something big that you're like, oh far Misophonia goes, This would be something I think we.

Lindsey: [00:51:57] Really talked about a lot of things. Um, I think it's important for as clinicians, as audiologists or as other type of professionals to, to be careful to stay within our scope of practice. And while I have trainings and I and I do things with my patients or with my clients through coaching, I know when something's out of my realm. I know if I've got somebody who really needs to be seeing a psychologist or a psychotherapist, we need to recognize that, you know, okay, now we need to this is out of sight of my scope of practice, and I feel like we really need to recognize that all professions, all professions do. And I and I feel like it's so important to be to have if you're going to work with with well, with any of it, with anybody. If you're going to work with anybody, you need to have a team of people that you know that you can work with together so that you know that patient or that client can really get the best results. And there have been times when I have gone through treatment with someone and we are not making progress. And it it appears that that they really do need more psychotherapy than they do sound therapy. And so I think admitting that is not wrong. It's honest and um, not trying to do something falsely or that you don't really know what you're doing, doing cognitive behavioral therapy. There are a lot of people who who audiologists within our scope of practice to do cognitive behavioral therapy with patients who have tinnitus and sound sensitivities.

Lindsey: [00:53:35] But you have to know how to do it. You can't just jump in and, you know, say, I'm going to give this a try. I'm going to give this a whirl. And so, you know, there's that. But then I guess the other thing just to wrap up is I think everybody is going to start seeing more and more about Misophonia and Phonophobia in the coming years, whatever that ends up being called or defined as, because even the definition isn't totally agreed on by different I mean, there's a whole committee, a consensus, a misophonia consensus committee to try to define what it even is and how to how to do all of this and how to treat it, how to, you know, do the intake, all of that. And that's great. But right now, we're still kind of in the beginning parts of this and there are a lot. There's a huge need. There are a lot of people that need help. And we're going to be hearing more and more about those in audiology and in psychology and in occupational therapy. So I think I'm excited. I can't wait. It seems like a new article comes out every every month and I just eat it up and I love it. And I think, I mean, even a year from now I may listen to all the things I said in this interview and think, Oh, well, that's okay. Now I have a better understanding of that. And oh, now I've changed, you know, just because.

Carrie: [00:55:01] Yeah, and that sounds like we're probably have to have another podcast because it is one of those like niches that we don't know enough yet. And as professionals, we know that what we believe today or what we know today, being a professional and getting more research may be different than what we do a year from now. And that's just keeping up with the literature and the research and being an ethical professional, right?

Lindsey: [00:55:30] Absolutely. Yep. That's perfectly stated.

Lindsey: [00:55:33] Yes.

Carrie: [00:55:34] So. Well, Lindsay, I cannot thank you enough for being part of the EmpowEAR Audiology podcast. I if our listeners have more questions for you, is there a good way to reach out to you?

Lindsey: [00:55:48] Sure they can go to. My email. It's a long one. I'm sorry. You know what?

Carrie: [00:55:54] I can put that in the show notes. I'll put the email in there. But can they? They can also visit your your guys's website, right?

Lindsey: [00:56:03] Yeah. So there's two websites. So we have one for our pediatric clinic which is little heroes hearing clinic.com or you can go to sound immunity.com and that's is is of course just for the sound sensitivity portion of what I do but I do free consultations or extended consultations. If somebody just wants to talk to me and try to get some ideas or try to to figure out what's best and so they can always schedule a free 15 minute consultation through sound immunity.com. And then we can kind of see if you know what some of the options are for them.

Carrie: [00:56:43] Okay. Well, thank you again for being a part of the EmpowEAR Audiology Podcast. It was such a great conversation and I'm sure our listeners will get so much new information as well as I hope that they reach out to you if they have a patient that they happen to be working with that has Misophonia and they need some different strategies and supports and therapies, they have a place to go to. Absolutely.

Lindsey: [00:57:11] I love talking to other audiologists and other professionals and kind of troubleshooting different cases, so please reach out to me. I love I obviously love to talk about this a lot.

Carrie: [00:57:22] So so I love hearing your passion in it because that's what we need is passionate professionals who are targeted in some of these areas. So thank you for all of that you do.

Lindsey: [00:57:36] Well, thank you. I really appreciate being here and letting my you letting me talk about all of this stuff that I just love to talk about.

Carrie: [00:57:46] All right. Well, thank you, listeners. If you love this podcast, please share it with others that you know so others can enjoy the EmpowEAR Audiology podcast.

Announcer: [00:57:57] This has been a production of the 3C Digital Media Network.

Episode 55: empowEAR Audiology - Thibault Duchemin (AVA)

Announcer: [00:00:00] Welcome to episode 55 of EmpowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:15] Welcome to the EmpowEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hi, welcome to the EmpowEAR Audiology podcast. And before I dive in today, I wanted to take a minute to share a bio about today's guest. I have Thibault Duchemin with me today, who grew up in Paris, France as the only hearing person in a deaf family. Sign Language was his first language, and he experienced from a very early age the multiple challenges that deaf and hard of hearing people face in understanding and communicating with the rest of society. Helping his family navigate between the hearing and the deaf worlds led him to find Ava, a mobile based artificial intelligence that empowers people with hearing challenges by allowing them to converse in real time with family, friends and coworkers. Thibault holds a double masters of engineering from the University of Berkeley and Paris Tech, and in 2017, he was named a Forbes 30 under 30 in consumer technology and is a member of the Hearing Loss Association of America Board of Trustees. So thank you for being a guest today and the EmpowerEAR AudiologyPodcast.

Thibault: [00:02:02] Thank you for having me, Carrie. It's a pleasure.

Carrie: [00:02:05] Yeah, well, I thought we would start off with your background story, your personal family story, and how that kind of guided you into your life purpose.

Thibault: [00:02:16] Yeah. So as you mentioned, I, I basically sort of like navigated through my family. So from the very beginning, the deaf and the hearing world. Um, I remember I think being 7 or 8 years old and doing my first demonstration in France with my family, where we can have like groups of us all together and we're defending sign language as a, as a language to be recognized by society. Um, so my parents and my sister are deaf and I was not born deaf, but grew up with sign language and kind of like, you know, obviously always kind of been facing those kind of challenges. Um, you know, I was at home at the end of the day discussing, you know, school, discussing work and seeing in many different ways, shapes and form the ways that, you know, challenging situations arise, moments of miscommunication, even more frequent. And all of this kind of like, you know, obviously growing up, you want to fix something. So you start by answering the phone. You start by intermediating and interpreting in situations where it's hard to find an interpreter. Parents are, you know, speaking sign language mainly. And I was always there until the moment I was not there anymore and kind of moved to the US and where the question of how can I continue to be a good family member, a good CODA sort of arise. And it led to Ava being one of the solutions for all the CODAS out there who are interested in and still helping and supporting their family in empowerment and autonomy.

Carrie: [00:04:00] Wow. Yeah. Sometimes I think it's our the challenges that we have along the way that make us very creative in problem solving.

Thibault: [00:04:09] Definitely.

Carrie: [00:04:11] So there's do you have any other stories to share about your experiences as a family role of being a CODA that you wanted to share before we move on to some of the AVA technology?

Thibault: [00:04:29] Yeah. I mean, I think, you know, I think it will be weaved across the interview, you know, just because of the questions that usually touch very real life situations. And I tend to really bring personal life and and situations just as examples. So let's let's let's move on to different topics and then, you know, we'll probably bring some stories there.

Carrie: [00:04:54] Okay. That sounds good. Um, so I know that I watched your TED talk that you did back in July, I think 20th of 2017, and it was titled Don't Silence Your Anger. Find your purpose with it. That's a pretty strong and emotionally driven title. Can you share a little more about how that title came to be?

Thibault: [00:05:18] Yeah, it's a strong title. Um, I would say sometimes people are afraid of strong emotions for sure. And, you know, we live in a society that tends to mislabel anger or really sort of designate it as an emotion to be afraid of for a reason. I think, you know, acting from a place of of speed and rush the emotional state doesn't always yield to great outcomes. I'm talking about a different kind of anger. It is something that sits with you. That is maybe what I would say is the healthy part of the anger. It always gives us a signal, right? Like if there's anger, there's, um, maybe a frustration that is being built up. There's a series of things that we, we find unfair or unjust that should not happen. And I think of anger not about the outcome that is created on society, but more the reason why it's even there. And that's what I pay attention to. And that's why I encourage people to think over it and pay attention to, you know, a lot of advice out there is find your passion. I say find your anger. Look at what it tells you about what is really important for you now. Because, you know, when you think about passion, so much of our passion is influenced by the society around us, right? Like we think we should be passionate about a certain thing and a certain way of living. But anger is just yet another key to say my passion is and sometimes for some people it can really open up a lot of thoughts and self-awareness around this. For me, you know, growing up in a deaf family, a lot of times I would see, you know, my my dad coming back from work and really being frustrated because somebody younger got promoted to be his or her manager.

Thibault: [00:07:11] Right. So you basically have situations where, you know, deaf/har of hearing people are not always promoted to the roles that they should be. There's assumptions and preconceptions about what they can do and what they cannot do. So they don't even bring the deaf person into the decision. That was just something that really frustrated me very young at the very young age and growing up. It's like, you know, watching your own father just not really being this father model because of those problems, like lead you to say, hey, you know, what can be done about this? So this is a personal example, but I found it resonating with a lot of other people. Um, you know, people come to me and they say, Hey, you know, I've not thought about this lens almost because maybe they were afraid to think about it or they kind of like throw the the whole thing, the baby with the water, right? Like, they don't want to to think about anger this way or they're taught to repress it or sort of like get rid of it. But really what it is, it's a scream. It's a signal. It's something that's been, you know, done wrong to me or is not sort of fully sitting with me. And I want to examine it. I want to explore it, and I want to understand what it wants to tell me. It's the message.

Carrie: [00:08:21] Yeah. So you definitely were able to take that anger and funnel it into a purpose. Yeah. You.

Thibault: [00:08:31] Yeah. It's a powerful motivation, I would say, today. I still obviously have the anger when new situations arises that we cannot, you know, honestly, it's like it's the empathy part, right? It's like you hear someone's story and it's in your circle of control, and there's this anger that fuels me to think about how can we do better? What can be more of service to our users, our customers, people who don't know us yet, and acting in ways that are just unconscious and not very thoughtful towards staff helping people. What can we do better so that we can impose a different standard that is more accessible and inclusive? I'll give you an example. You know, during COVID, where everybody sort of switched to different online platforms, that sort of thing, people really, really, really left out in person with masks. It was very hard for them to navigate. I mean, you know, can you imagine like relying on lip reading and suddenly from day to the next, having to basically ask other people to either trade off their health or with this whole kind of psycho situation or, you know, it's kind of like nodding and not knowing what the person just told you. And, you know, even online in their own organization, not really having a say about the solutions that are being kind of imposed. And a lot of those solutions didn't have captions or even ability to ask for captioners or interpreters to kind of connect in the call.

Thibault: [00:09:59] So the usability and experience of deaf/hard of hearing people were just terribly terrible. And a lot of times it was kind of revealing, um, I would say power struggles and different levels of dynamics. And so for us, like seeing this and watching it because we have we had a lot of users and deaf people all across the US and Europe facing those situations, asking us for help, like it led us to develop a version of AVA that also works online. So it's a desktop and mobile based application, just an app, but without talking too much about the product, really what it is behind is that we just get a signal and we get like to be very close to what actually the state of society is. It reveals a lot of unfairness And you know, when you have a lot of this unfairness on your on your chest, it's like there's one constructive way and healthy way to solve it, which is to funnel it into a I would say, a long term project, something that can actually chip at the problem. And there's another way to kind of process it, which is to yell and, and you know, it's just not like be unrestful with it. So I think the challenge of like processing that anger is important. But once you do this, it is a very powerful driver and fuel of energy.

Carrie: [00:11:16] Yeah. I'm glad you have been able to use your anger to drive you to productivity in the in your AVA business. But before we talk about AVA, I know a lot of people have experienced captioning on some level, but I think there can be a lot of confusion too about the terminology of different captioning. So for the purpose of our listeners today, could you give a little cliffnotes version of the difference between what is a subtitle versus closed captioning and open captioning and live captioning? Are those different captioning things?

Thibault: [00:11:55] So there's a big bucket typists is a is also a thing stereotyping, you know, fast typing, typing captions. Look, we live in a world where captions are everywhere now actually more than it was five years ago. And this is good. We have multiple senses and sometimes hearing is not always going to be there, no matter if we're deaf, hard of hearing or hearing. And captions are really are the visual way to transmit information. You know, obviously this is when you don't speak a visual language like sign language, but that's most of the world that is in this situation. And so that's why caption is really, you know, serving everybody who can see and who can read. Um, and I think, you know, captions capture the the, you know this whole job or purpose of transmitting the information with with text with language you know subtitles specifically is about like a prerecorded audio or video that you basically going to sort of like create the captions for. Um, and the file is basically subtitle and subtitling is basically taking something that is prerecorded already existing and adding captions to it. Um, the live captioning is when you do this online and you know, live, you know, where you don't have any sort of like weight or sort of delay between the moment it's being said and the moment you're captioning it to do live captioning.

Thibault: [00:13:29] You basically have multiplicity of technologies. Value typing means quick type in Latin and you know what that means is basically trying to go fast to type and caption You have broadcast captioning, you have stereotyping where you basically use shorthands to type faster and that's usually used in trials and the law just because of the sheer amount of of those situations that calligraphy is also a way to go faster. So there's this multiplicity of situations. We wanted to also simplify this by using the word scribe, by basically sort of saying, hey, you know, instead of kind of naming or having to choose between all of these different jobs, like let us introduce scribe captions, which are basically for us, like another process of creating captions that is being done live and is being done in awareness of the other person who is reading. So a scribe may have more information about the user and the person watching than typical captioners. And this is really kind of reconnecting us to the older, you know, function in  ___ where you had this intermediary between people who didn't know how to read and people who use the the writing, the written language. So we see scribes as more intermediaries and we use scribe captions, which is this professional 99% accurate in in real time technology that is based both on AI and on human accuracy.

Thibault: [00:14:59] Okay.

Carrie: [00:15:00] Yeah. There's so much out there and I agree the last five years has been a big boost. I think COVID helped some of that because a lot of people were like what you were saying, the deaf and hard of hearing community was kind of cut off. And for accessibility purposes, I feel like that really helped in that sense because people were angry about it and wanted something done.

Thibault: [00:15:25] Yes, petitions were made. I mean, we had just an explosion in people using our app and really sort of giving us feedback and then building with them different situations like the scribe service, the ability to use AVA online for Zoom meetings and and meet people where basically saying, Hey, I'm on this platform that, you know, is using this language or basically is in this software is a company software. I cannot, you know, sort of follow what's being spoken about. And we always had this approach of don't make more problems by creating solutions. I think sometimes people complexify what should should happen. So AVA is basically working on top of any situation or any conversation. So you don't need to sort of have an integration for a specific software. It is platform independent. Which kind of like helps you be autonomous. You come into a conversation that'd be online or in person meeting, and you basically have your own solution that will provide you basic level of understanding and expression. So it goes in both ways. And too often I have this situation where even today people use tools like we have the, you know, the captioning tool on Zoom. It's it's great. But the problem is what happens if what I'm saying or what is being printed on the screen is not correct. I have no way to correct it. If I want to answer something and I'm nonverbal and I'm deaf signing, right, I'm going to type in a chat so people can read it. But if you've actually been in a meeting, people are pretty quick at following and the audio space, they don't really look at the chat in real time. So as a deaf person, I'm going to be disadvantaged. So we basically built a series of tool to really help, you know, true integration and inclusion versus like basic compliance, which is accessibility. We go a bit further by just saying, Hey, how do we invest in autonomy? And I think that's kind of the direction of, of the captioning, sort of like state of the art today.

Carrie: [00:17:26] So kind of taking like maybe a little step back. I know you said the anger kind of fueled you to think about this as the purpose or a project that you are going to do. But how did you actually get started? I know you had the idea for AVA, but can you kind of back up and just kind of share how everything did get started?

Thibault: [00:17:50] Yeah, absolutely. Um, well, I think this is a process of building a company is first, you know, building a team around an idea and motivation. We've been always set on making the world more accessible for 450 million people, it's going even to 750 million over the next 20 years. So. The very early stage was a few encounters. You know, I come from a deaf world, like using sign language as a first language. I met a lot of deaf and hard of hearing people on campus in Berkeley where I got started. And at this time, it was really a time of, you know, a lot of hope, a lot of excitement about technology. And maybe at this point we didn't have. A lot of like sort of pessimistic views. So for me, it was really interesting to be at the forefront of machine learning technologies and in the same time, coming from a deaf or hard of hearing background, it's like knowing that this also technology is not often, you know, dictated. Like therefore I think people receive the developments of technology, but they don't get usually to participate in building those technologies. So for me, it was really, really important to, you know, have a say there. I had a sister at the time who was studying law and basically told me like, hey, you know, if I want to be a lawyer, there's no deaf lawyer in France, so how am I going to do? And so one of her first project very early on was to to actually kind of build a glove, a physical glove, to translate sign language.

Thibault: [00:19:25] This is something has been done over the years. You may have seen some videos. It's it got us started. And I would say unlike maybe 99% of the other teams who try to do this, we continued around the mission because in the end, it's like while the glove was maybe not the right form, there was something in there which was the immense pain and difficulties of integration in society of a lot of people. Not everybody. Some people are just very well integrated, autonomous and happy. But there was a really strong driver for us to work on accessibility. And what we noticed is that it was harder, specifically even in the US, we're supposed to be, you know, ADA accessible with a lot of structures. It's just felt that deaf people were still, you know, having difficulties in social situations and specifically group conversations. And when you think about it, it makes sense. You start seeing, you know, multiple people at a dinner table, right? And even a cocktail party situation. People speak. It gets loud in the background. It's like conversations. So sounds can be bouncing. There might be music in the background, right? Like all those deliciously horrible situations that we remember and and it makes it very tough to be in a situation where you're just like, just met someone. So that person may have an accent myself, have an accent, they have a message. And it's like all this thing that just actually how we meet new people, make new friends.

Thibault: [00:20:51] And so if this is not accessible, then it is really hard for a category of the population to make new friends, create professional opportunities. You know, it can happen in some structures like at work, but what about this happenstance, spontaneous thing? The best example is like me. And you know, here I'm bringing some personal stories, but me being next to my mom going shopping and really people going to her and asking her for directions, you know, like how many times can you just, you know, start a discussion with a stranger when someone asks you for a direction many times. Right. But when you're deaf hard of hearing, it can be harder. Much harder. Like my mom used to kind of answer like, hey, I don't hear now. She uses Ava, like she puts up her phone, her app and then says, Wait a moment. And then it captions what the other person says. And she can give that that part of kind of like being a great citizen, being a great member of society. So I think this socialization aspect for us felt the first domino work on this massive problem, you know, because in the end, it's very it's not a technology problem only. It is a full stack problem that requires a full stack solution. So it has multiple components. It's like how like how much patience we have when we are accommodating someone, how much attention we give to like undivided attention to somebody else in 1 to 1 coffee meeting versus in a group conversation.

Thibault: [00:22:14] I don't get as much presence with every guest, especially if one is deaf hard of hearing, right? So it's all those subtleties where it looked very important for us to work on this problem. We met a lady called Alma who told us that within her own family it was very hard for her to just follow a normal dinner table situation. And I felt very moved by this because in my own family, you know, I always had vivid and rich dinner conversations in sign language. But to be in your own sort of like circle and intimate circle and not having easiness to understand what other people say, that just struck me. And I think from there we really felt like this is something that is worth spending a lot of time trying to figure out how to make better. It turns out that the technology we needed didn't exist at the time, so we were foolish enough to actually say, Hey, we might actually solve it. We talked to the founders of Siri, Shazam, of Google speech as well, and we actually really, you know, made a dent in this. Like we I'm proud to say we were the first company and we still are to provide a group conversation based captioning, which does help a lot of deaf people like face the Thanksgiving dinner syndrome, the situation where a lot of people speak. But we went much beyond this. We just started with this first domino and a lot of others fell as. Consequence of this action.

Carrie: [00:23:39] Yeah. Would have to agree that having individuals and individual people who have experienced the communication challenges firsthand gives you so much more insight into what needs to go into accessibility and programs.

Thibault: [00:23:58] Yeah, and it is an opening, right? It is a first foray in as many ways to approach problems in accessibility. Some people say, Hey, there's a lack of interpreters, let's train more, let's make the scheduling easier. Other people say, hey, you know, let's automate sign language. Other people say, hey, let's, you know, put captions on TV to be better on movies. I think there's a moment where as an entrepreneur, you have to really diagnose and think what is really the first domino and think first principles. You know, my my dream would have been to kind of help on the issues with accessibility. Like I would love everywhere to have an interpreter 24/7 but just cost twice. It's very complicated, right? And in terms of training, it takes time. So there was this way that we could solve and make first steps towards accessibility issues, and that's the way we took in. That brings us now to our hundreds of thousands of people using the app every day.

Carrie: [00:24:55] Yeah, which kind of is a great seque into, you know, you've talked a little bit about AVA and being able to be used, you know, for a group situations and for work and things like that. But can you just maybe dive a little bit deeper into how that is set up and how somebody might utilize that?

Thibault: [00:25:19] Yeah, the key thing is simplicity. You download the app, you go on the website If you need to just be on a Zoom call or Google meet call and you need captions to be your formats and you need to be able to answer and be heard. So you basically download it, create an account and this account is free and this helps you have access to our captions unlimitedly. So you don't have to pay to have captions. Nobody, nobody should have to pay for accessibility. It's really our belief. Now there are situations where your own company, your own school, basically if your students may, you know, have a say and a responsibility in this accessibility. So it's basically, you know, you think about society, not everything all the burden should be on the individual. So we basically propose premium plans like pro plans that are meant to be financed and funded by the organizations you a member of. If you retire, there's a community plan that basically gives you a bit more advanced functions. And those functions could be translation, could be a higher level of captioning that is more adapted to professional settings where you can customize vocabulary, things like this. And this is so that we can create a cross funded model. So basically people who have, you know, a job and a school that can pay for it can basically finance partly obviously like in a lower a lower capacity accessibility and captions for the other people. And I think this is maybe the socialist aspect of being from France. It is really important to think about like accessibility as a common good that we all own and as a community, as a developing community, it is possible to support the captioning of the other members of the community.

Thibault: [00:27:08] You don't always need to do like the fund where the hearing people contribute to it. But when you get your school and your job and your company to provide for it, you know the right level of captions, then you basically in the same time ask for a little contribution for everybody. And that's kind of the same principle for you. It's free. And the point of it is to be always free. And for employers and for schools, they can pay for both the AI version. So that means the automated captions and on top of it the human provided captions too. So this is in the domain of captions. We don't provide interpreters, but we provide captioner which often are good, either complimentary solution or a full solution for people who are deaf or hard of hearing. It could be in a pinch. You don't have time to kind of schedule an interpreter. You can have get captions with our scribe service within 30 seconds in business hours. So that's quite incredible, right? Like I've seen a lot of people wait for weeks or having trouble scheduling a captioner or maybe somebody like cancels last minute. This is very much of a of a great solution for people even who already think they have all the tools. This can actually sort of be really great in a pinch to.

Carrie: [00:28:21] Mm. Yeah, that's a great way to have access quick and to know where to get it. And kind of thinking about it from, you talked a little bit about schools and things like that, but in my job I work with a lot of teenagers who are thinking about going to college or university and may have difficulty in their classes. How did that look for a college or even a high school kind of setup?

Thibault: [00:28:50] Yeah. So college and high school are, you know, hybrid environments. You may have classes online, you may have classes in person. Let's assume there's a variety of situations like amphitheater style and then small class, I would say like, you know, group project style, where, you know, you maybe are like 10 to 15 people around the teacher. So in person, mobile app and computer could be useful online. The computer this helps you basically have captions where the action happens. So when you're in class, we basically, you know, either you're in a small situation, small class and the sound is good and you basically get captions on the computer. So you open our desktop version and the sound basically just goes through into your computer and captions what's being said. You can click in one click, you know, schedule scribes for any of the classes you have upcoming, and then they will show up at the time the class start to make sure there's no like fractions situations where an hour just comes up and you just don't know what the teacher said. So this is, you know, very easy to use in class when you're in an amphitheater and then the voice of the teacher might be a bit further. We actually got your back as well. But you're going to need to get closer to where the person is speaking. So either you go in the first row or you actually connect a simple Bluetooth microphones.

Thibault: [00:30:22] We provide some Bluetooth microphones that range from $30 the units to maybe $100. If you want the higher end quality, you can get your administration or city managers to pay for it. But basically you just go to the teacher and you just, you know, put the microphones either on their lap, on the like as a Clipper microphone or just like in a in a desk next to them if they're kind of stationary. So that helps them just very easily without having to do anything with their phone or mobile app be captured in terms of audio. And you can just get the captions of what is being said in the same time the scribe, which just remind you guys is a is a physical person who's going to be remotely listening to the conversation and captioning it and editing in real time. This person is going to make sure that the accuracy is really high and they're going to hear better through the microphone that you may have next to a teacher. So this is a situation that is a very class oriented situation, but obviously AVA is very useful outside of it. So you may have a cafeteria lunch where you basically discussing with someone and, you know, it might be just a one on one situation. You just put your phone next to you as you're eating and then while you're kind of eating your plate and looking at the person speaking, you can glance over to the screen of the mobile phone to see what you missed.

Thibault: [00:31:38] And this is a very, you know, hands off situation, right? Like you don't need to hold it or anything. It should work. Now when there's 3 or 4 people around the table, I'm really going in the full situation. But that's really those key moments. You actually just show a simple QR code and classmates, even people you don't know who are at the table can basically use a simple camera to scan the QR code and be connected to the conversation without having to download the app. So really, it's just, you know, the same way as we've been ordering during COVID in restaurants. It's just you scan a QR code, it opens a web page, and then what they say is going to appear with their own color on your phone. And I think, you know, that's such a lifesaver. You don't have to sit alone in, you know, cafeteria anymore. You don't have to kind of like nod. And you didn't really understand what your classmate talked about. And I think that's those moments are very formative when you kind of like go to college or even when you're starting university, maybe even the first year. That's where you make friends. That's the first domino where also to make sure it's correctly accommodated for.

Carrie: [00:32:42] Yeah. And so when you were talking about the QR codes and everybody kind of like scanning it, so that does that then make their phone a microphone as well. So it picks up their voices. Okay. Exactly.

Thibault: [00:32:55] So there's one thing that I'll just say very short. It's you are autonomous, you have your own app and you might pick up pretty well, even if there's a lot of background noise and people speaking far away from you. But don't settle for 80 or 90% accuracy, you can boost it by simply sharing to another person at your table. Hey, if you scan your microphone, I'll be able to understand better what you say. How about we do this? That takes 30 seconds, even less. And then this also allows them to be helpful and to accommodate you. And it's not so much of a friction. You may disclose that you have hearing loss in this situation. So this is something that is completely optional. But I would say everybody, even the young people, now use captions for TikTok for Instagram. So why wouldn't they use caption for a conversation with you in person on top of it? It's just cool. It's a new technology, you basically being a super human, having like new ways to to understand the conversation like this. And if you don't want to record it or have it, every trace of it, you can always delete it or choose to not record the information too. So this makes it very private, secure and great for teenagers as well.

Carrie: [00:34:10] Yeah. No, I'm going to have my teenagers try that out at our we have a group meeting or a peer mentorship meeting, and I'm sure they would love to experiment with that and then possibly use it in their everyday life as well. One other topic that I thought we should touch on would be health care and accessibility too, because I think it's important to recognize that every deaf and hard of hearing person does require different accommodations and supports, and we should be asking what they prefer before an appointment. And I don't think that always happens. But yeah. What is your experience been with working with health care facilities to help them be more ready to accommodate different individuals?

Thibault: [00:35:05] Yeah. Let me actually ask you if you care to share, what has been your experience going and I guess it's not the same in your practice versus outside, but what has been your experience on accessibility? And I'd love to talk about mine as well.

Carrie: [00:35:20] What has been my experiences. Yeah. So honestly, it was interesting. I was thinking about this the other day about how unaccessible our, my cochlear implant surgery was because I was in obviously a situation where I wasn't able to hear because I was going in for cochlear implant surgery and everybody had mask on and it was still, you know, right after COVID or I mean, COVID was still happening. So there was, it was very much, um, restricted as far as, you know, not, not being able to see. And I was thinking, wow, it we, they weren't set up at all to have accessibility. And so, you know, in my situation, my husband was my my ears and but they're saying a lot of important medical information to that. He wasn't getting all of that because it's so much coming at you. And so, yeah, it made me think, like as an audiologist, I mean, I work in the schools, but audiologists don't always doing a good job in their own private or clinical practice to make accessibility something, um, just common, I guess I should say that expected, you.

Thibault: [00:36:51] Know, and that's even crazy because you're going for, you know, hearing related surgery and had no accessibility. So the standard today, the state of the art even in the US where I believe the healthcare expenses are the highest, you know, per person. So even in the US, you just have this subpar experience in one of the most stressful situations. And. That's going to change. That's going to really, really change. It tells so much about how unprioritized deaf/hard of hearing people have been and about how in the end it's really down to a question of costs and ability. It's like, you know, probably people don't want to ask the question of how you want to be accommodated because they just don't have the budget for it. If they don't have the budget because the voice of deaf people have not been really heard to fight for decent budget for it. And, you know, it's not to kind of denigrate all the existing policies. They're just not enough. And I think everybody can agree to this. It's they're not enough to just think that you're going to magically provide all the needs and cater to the needs there. You have a lot of deaf/hard of hearing people who are basically coming with a family member, you know, and that's what you did, right.

Thibault: [00:38:06] And so it's like so interesting to see how broken this is. And like, you know, we're not just a health care accessibility company. We are a full sociFinpatient care situation. So there's a few institutions that we're working with, some in France, some in the US, where basically a deaf/hard of hearing experience will be 24 over seven accessible in a hospital. And that is so exciting because that's the future. That's what it should be. It's like.com for a first outpatient experience. Maybe they go to the help desk. The help desk will have a QR code, but this happens today. Already in some places you have this QR code and then the patient basically scan it and then there's a conversation happening with the person at the help desk. Then they know they can download this app that they will use for the rest of the medical staff because sometimes the staff is not equipped or doesn't know about this app. Of course, sometimes it's the first time they discovering somebody who is deaf hard of hearing. But you will have this app that is provided and supported by the institution, right? And we believe this to be the right approach. It's a balance between you bringing what you need, but also the institutions of being equipped. So there's a dance between accessibility and autonomy.

Carrie: [00:40:27] Yeah. And I think that if especially in the field of speech and hearing or audiology or ENT this should just be something that would be available and just on. And we should be asking each one of our patients like would you like to have captioning turned on? And by downloading the AVA app onto an iPad, they could have it accessible within moments.

Thibault: [00:41:00] And what's interesting is that for everyone who says that they had a terrible experience at the hospital, this can end now. And there's two levels of accessibility, right? There's one that is accessibility you bring yourself. Right? It's like when you bring your husband, when you bring like a friend to help the translation, like this is not perfect accessibility, but this is a working accessibility. Obviously this is not to encourage and to kind of call the gold standard. AVA is the same. It's like you bring your captioner with you to make sure this is working for you and on top of it you can, if you want, pay for a scribe, which is a professional captioner to make sure that whatever is coming out of the tool is not AI fully. If you really need a super high quality situation in this situation now, if you come to this hospital, it might be that if you're recurring patient or as you go and then people realize that you're using technologies to accommodate the conversations, they actually will equip themselves with a good standard of accessibility. And that might take more time, which is understandable. But in the same time, it is doable today to solve most of your accessibility issues. And I think a lot of people have a hard time realizing that the day to day can change instantly.

Carrie: [00:42:21] Yeah, no, I hope people who are listening today, if they take one thing from this, is that they have the access and the tools right in front of them in order to do something better for their patients and individuals that they see every day in their those that were.

Thibault: [00:42:41] Thought for them. And from that perspective, the device, I would say the deaf hard of hearing eyes.

Thibault: [00:42:49] Yeah.

Carrie: [00:42:50] So this was a great conversation. But is there anything that I didn't ask you that you would like to share? That I missed.

Thibault: [00:42:59] Well, I mean, I think there's a there's a lot of topics we could talk about. But I think the you know, overall, the idea is that change is now and is in your hands. And there's a time for complaining and saying how broken things are and there's a time for getting your hands dirty and actually giving it a try to all the things that are being sort of created around you. Um, but now what works for other people may not work for you and where other people have stopped at and it could be a situation where people just feel content with, you know, simple automated solutions. You can actually get the flexibility you deserve and you want. And this is really something that, you know, we find ourselves, as I would say, accessibility professionals like you are as well. Um, always playing the role of coaching and helping people feel confident and secure in the society that they didn't really let them feel this way or didn't make it easier. And sometimes they do, and they teach us a lot. But part of our work is also to say, No, you can do it, you can be autonomous yourself. You can take back the reins of your own accessibility and and actually make it happen.

Thibault: [00:44:12] And when you do this fight and this advocacy, I might say other people will thank you because you've made this, you know, hospital that you went to a few times accessible by just raising your voice, being sure you were loud and clear. When you say I need accessibility. So my only last word would be around. Advocacy is self advocacy is absolutely paramount. It doesn't have to be boring. It doesn't have to be, you know, a wall of issues. You can make it sexy. You can make it easy. You can show to people that advocacy is not you telling, hey, you're not being legal and not being compliant, not always sort of bringing the stick. Of course, this is in the backdrop. The stick is important, but you can also also bring the carrot and you can say this is something you can solve easily and we can end today if we just have a bit of a motivation to do so. And so that's what AVA is audio visual accessibility. It's near. It's in your hands. When you download the app and we help you get there.

Carrie: [00:45:13] Well, that was a great way to close our conversation today, and I really appreciate you being a guest and in the show notes, I will link the AVA website so people can link to that and explore all of the different options that you have. And like you said, they can go to wherever they download their apps and find the easy.

Thibault: [00:45:35] Yeah.

Carrie: [00:45:36] Yes. And I also link to TED Talk because I thought the TED talk was just amazing as it went back into your backstory and how you really got to the point of making a difference and actually getting action out of your anger, I guess, in that sense and putting it to good work. So again, thank you for being a guest today. Listener Thank you for listening and please share the EmpowerEAR AudiologyAV podcast with anyone that you think this would be helpful for and we look forward to you coming back with our next episode.

Announcer: [00:46:13] And this has been a production of the 3C Digital Media Network.

Episode 54: empowEAR Audiology - Donna Sorkin

Announcer: [00:00:00] Welcome to episode 54 of Empower Audiology with Dr. Carrie Spangler.

[00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Before we get into today's episode, I would like to share a little background about today's guest. I have Donna Sorkin with me today, and she is the executive director of the American Cochlear Implant Alliance, which is a national organization devoted to expanding access to cochlear implantation for all who may benefit. She has a long career in advocacy for people with hearing loss at for profit and nonprofit entities. She has had a cochlear implant for over 30 years and brings a personal experience and enthusiasm to her work in the field. She was previously the executive director of two organizations Hearing Loss Association of America, which is an organization mainly for adults, and the Alexander Graham Bell Association for the Deaf and Hard of Hearing with a focus on children. Ms. Sorkin has served for 11 years as vice President, vice president of consumer Affairs at Cochlear Americas, where she led public policy initiatives and other activities aimed at the broad life needs of cochlear implant users, including insurance coverage, habilitation for children and adults, and educational needs of children with cochlear implants. She has served on federal, corporate, and university boards, including the US Access Board, which she was a presidential appointee and the National Institute on Deafness, which is part of the National Institute of Health Advisory Boards. She holds a master's in public policy from the Kennedy School of Government from Harvard University. So, Donna, thank you again for being a guest. And I'm so honored to have you today.

Donna: [00:02:37] It's great to be with you, Carrie. I'm honored to be part of your program.

Carrie: [00:02:43] Well, I was trying to figure out when we met Donna, and I feel like it was a conference many years ago and we had dinner. And I want to say it might have been with another Donna. With Donna Smiley. Do you remember that?

Donna: [00:03:00] Yeah, I remember when I met you. I think it was actually with Cheryl DeConde Johnson.

Carrie: [00:03:05] Oh, it might have been.

Donna: [00:03:06] You're right that it was at it was at another meeting. And I remember eating outdoors with you. That's what I remember about it. And I can't remember what what conference it was, but that's definitely when we met and Cheryl introduced us. And so I've known you ever since and admired your your contributions and the way you support children and enhance what all of us know about hearing loss and growing up with hearing loss.

Carrie: [00:03:39] Well, thank you. I'm so honored to have you today. I wanted to take a deeper dive into a couple of topics with you because you have such a wealth of knowledge. And first, I want our audience to be able to hear a little bit more about your personal journey of getting a cochlear implant, because I feel these stories are important to share for our listeners who may be considering this path or even professionals who are guiding our patients. And then I also, after we kind of talk about your personal experience, we'd love to take a deeper dive into your professional experiences with the American Cochlear Implant Alliance. So how does that sound?

Donna: [00:04:19] That sounds perfect.

Carrie: [00:04:21] Alright. So do you want to start a little bit about your personal hearing journey and how that started for you?

Donna: [00:04:28] Sure. Um, actually, my experience with hearing loss started before I noticed that I had a hearing loss because I come from a family of people who were hard of hearing. That's what we used to always call it. We would say somebody was hard of hearing even if they were audiologically deaf. And so my paternal grandmother was quite deaf, you know, and and and in those days, the the amplification was a big box that she would wear inside of her shirt with a, you know, a lot of wires. And I don't know what her audiogram looked like. I just know that in the time that I knew her, she really didn't communicate very well. And we we sort of ignored my grandmother. It was it was kind of sad and and she was a wonderful cook. And she would busy herself in the kitchen, you know, cooking for us. And then growing up, my father's hearing deteriorated. And I do have his audiograms. So I, I know that he had a, a moderate to profound hearing loss and, and probably would have been a candidate for a cochlear implant. He he wore hearing aids the entire time that I remember him. So I grew up with with having experienced that and in two important adults in my life. My dad ended up Having to retire when he was 52 years old because he couldn't do his job anymore. And that was prior to the ADA. So there were no accommodations for him. He was an economist and he worked for the Department of Defense. And part of his job was to go to congressional hearings and present the budget needs for the Department of Defense to the Hill, to Congress people. And it became extremely difficult. And I have to imagine traumatic for him to do that because he was less and less able to hear what was going on. There was, you know, no assistive listening devices, no captioning, no accommodations for somebody at that time. And so he he retired. And at the time, this is actually kind of an interesting anecdote that I just thought to share because it shows how much things have changed or maybe not changed. At the time, we all thought he was retiring because he had previously had a heart attack and we thought that he was was concerned about his blood pressure and the demands of his job and that that's why he had retired on a medical disability at age 52.

Donna: [00:07:34] And it wasn't until much later, until after his death that my mother shared with me that the reason that he had, in fact, retired was that he couldn't hear and he never wanted to discuss that with anyone. And so we didn't realize, you know, what was going on. And when I when I found that out from from my mother, I shared it with my sister and my husband. And I said, you know, why did you think Daddy retired? And they they all said the same thing. Oh, because of his heart related issues. So although they didn't specifically say that to us, it was what we took away. And so it was a measure of his embarrassment, his unwillingness to talk about his hearing loss and how it affected his life and in very important ways. And he always was proactive. He you know, he was always he always wore hearing aids. He always tried to hear the best that he could. But he was limited both by the technology at the time, which, of course, is improved and by the fact that he did have a profound loss. So that's how that's what I grew up with. And I was actually tested in elementary school. We used to test children regularly in elementary school, and we used to test out to 8000, which we don't do anymore. So in, in when they when I was tested in elementary school, I would be normal through 4000. And then they would pick up a hearing loss after 4000. And so I had I that's what I grew up with. And in those days, we didn't think about that kind of hearing loss. We didn't we didn't do anything for a child. So I would, you know, just went on my merry way and no one really said anything to me about it. And then when I was probably in college, I started to have more difficulty hearing and I would always place myself at the front of the classroom, at large lectures. And then when I started to be in the workplace, I started to have more difficulty. And I remember one of the places where I worked. They were really nice about, you know, what do you need, what do you need?

Donna: [00:10:13] And so they gave me an amplified phone. Um, someone that I really liked, used to take notes for me at a meeting to make sure I didn't miss anything. Um, and then this was before I got into this field and I was working in public policy issues, and I was often giving talks to large audiences. And so I had tricks, you know, And one of my tricks was I would get off the podium and walk into the audience to take questions so that I could see and hear the person asking the questions. And people thought it was really very interactive and oh, she has a great style of presenting and interacting with people. Um, but I was really just getting close enough to be able to respond to questions appropriately so, So that's what I used to do. And then, you know.

Carrie: [00:11:09] Just for one second, at this point in time, did you have hearing aids or when did you actually get hearing aids or you were still navigating and coping at this point?

Donna: [00:11:21] Not yet. Probably a little bit after that. Um, I, I bit after that I got hearing aids and I actually started to use an FM system which was actually in meetings and stuff was the most helpful for me or in a noisy place, you know, I would put a FM mic on someone to help me hear so that that was something I would do and I knew where to place myself in the room. So I was doing some things. And, um, honestly, this was before digital hearing aids. So I was using analog hearing aids and I had a very steeply sloping audiogram and it very difficult to fit. Um, and I also never did well with loud noise. And so I honestly tried to use hearing aids but did not get much benefit from them. And it was painful for me, you know, because I'm using these, these analog hearing aids with a very steeply sloping audiogram. Um. So not not much benefit. And so I was you know, I was really I was really struggling. And I didn't I didn't know what I was going to do, whether I'd be able to continue to work. And so this was around 1992. And so my wonderful audiologist at the time who I've spoken about many times, her name is Susan, and she's still practices in Rockville, Maryland. She was my audiologist and she said to me, Donna, I've done everything I can for you and you're still not doing very well. And I would like you to just explore a cochlear implant. And she gave me the names of some patients of hers that had gotten a cochlear implant. So she gave me just a very gentle nudge, you know, go, go look at this. And she did it just right. You know, it's just it's just what you want someone to do. You don't want to be aggressive about it. You don't want to say you're at the end of the line. You know, you just want to say you're not doing as well as I think you could do. And so that's what she did. And and so then I had actually a really wonderful internist. And remember, this is before the Internet where we could go in and find out where to go before the American Cochlear Implant Alliance and where you could go on our website and figure out where there were clinics that did this.

Donna: [00:14:15] So my internist did the research for me. What a great team I have. I had a great audiologist and a great internist. And so he figured out where to go. And I was living and still am living outside of Washington DC. And the place you went at that time was Johns Hopkins. You know, that was the main clinic in the in the region, in fact, the only clinic in the region. And so he he called he talked to them and he said, okay, this is where you're this is where you need to go to get evaluated. So that's what I did. And that was in October of 1992. And when they tested me, you know, you're always tested and best aided condition then and now. So that means with your hearing aids on um, I, I was able to understand 4% of words and sentences which is guessing. 4%. Right. That was pure guessing. Yeah. So, so what that meant was, if I couldn't see your face and I was so very good lip reader, I didn't know what you were saying. And I obviously couldn't use the phone. And life was pretty difficult for me. So I went forward very quickly, my first appointments mid-October, and I had my surgery on December 1st. Wow. Yeah, I moved really fast because because I had decided once I saw people who had them and realized how well people could do with them, I decided, why wait? You know, so and at the same time, I was taking I had been selected for the to be the executive director of what was then called self-help for hard of hearing people. But it's now Hearing Loss Association of America. So I did those two things at the same time. I started my new job on January 4th and was activated with my CI on December 21st after having my surgery on December 1st and we were building a house. Oh my goodness. That is a lot going on at once. A lot. Going on. Oh good stuff. It was all good. So thinking about.

Carrie: [00:16:35] So you said December 21st you were activated then, is that correct? Yeah. And so what was that like as far as adjusting from a kind of somewhat using a hearing aid or a hearing aids to getting a cochlear implant and getting activated at that time?

Donna: [00:16:53] Yeah. So, you know, right away what it gave me was sound awareness, which I didn't have before, you know, So the clarity wasn't there yet. Um, and things sounded a little bit off, you know, I recall things seeming. Um, out of sync. You know that what what would see on the lips was different from what I was hearing. But my husband right away remarked that he could just start talking and I would look at him, and in the past he'd have to tap me to get me to look at him when he talked. So that was that was a benefit right away. And I, I started to be able to have much more assistance with lipreading. I was still lipreading at that point, of course. Um, but it was, it was much I was getting much more out of what people were saying. It wasn't so hard and I didn't have to get repeats, you know. And my mother remarked, um, when I came home from my activation, she came over and we were sitting on the couch talking and she started to cry. And and I said, Well, you know, why are you crying? And she said, I just never thought it would work. I didn't believe it would do this. You know, she she noticed right away that it was much easier for me to understand what people, what she was saying and that I didn't have to get repeats.

Donna: [00:18:33] And it was it was So that part was different right away, you know, that I just had more support for lipreading  and then then over time. You know, And none of this happens immediately. Not now, not then, but over time. Everything just fell into place. And by the time I got a second sound processor, it was at the time when all of the technology was evolving quite rapidly and improving. So my first sound processor was a box, you know, as was my second. My second one was too, but the second one had much improved sound processing capabilities and it huge difference for me. And within two weeks I could talk on the phone, which I which I had not really been able to do with, without a lot of, you know, support and stuff. So, so what that meant was I could understand speech without seeing your lips. And that happened with, with the change in, in the external processor, really important message for anybody that's thinking about this or thinking about it for a family member that the improvements that occur in this technology mostly happen on the outside. You know, And so in the time that I've had this, which is 30 years, I've had seven sound processors.

Donna: [00:20:14] Wow.

Carrie: [00:20:15] And I'm sure everyone brings. New.

Carrie: [00:20:20] Bells and whistles and ability to improve hearing in different situations. But is there any switch that you were like, Oh my gosh, this is kind of a big, you know, game changer for me?

Donna: [00:20:36] Yeah, there was, um, I think probably around the fourth or so sound processor that I got. Um, had a bigger grab of sound. And so I could hear at a that sounds that were at a distance more. Um, and that was a big difference. You know, I could hear people in another room, I could hear environmental sounds that I hadn't ever been able to hear before. So that was a big one. Um, you know, the, the Bluetooth is kind of cool as well, you know, being, being able to talk on the phone and have the sound come right through the Bluetooth technology is nice. I still use the Telecoil if I have a landline phone. Um, but as you know most phones or most people are using mobile phones now, so mostly you're using Bluetooth then but, but for example in a, in a theater or something that's still using a system that connects to hearing technology, whether it's a hearing aid or a cochlear implant, people are often relying upon a telecoil and the phone that sits on my desk is a landline phone. That's our our phone system for the office is a landline phone so I can switch the t-coil on for that and it works quite nicely for that. So I think what's been really nice with the technology is it's it's evolved with what's gone on in technology and society as a whole. And so we, we benefit right along with that. And for example um, Apple for their telephones, we've worked with all the companies so that you can stream directly from your phone into your technology, you know, if you want to. I still like to use the phone clip because sometimes I like to put my phone down. I'm working on the computer and I'm talking to someone and I want to not have to be holding the phone. Um, but it's, you know, it has that the, the improvements. I've been really fortunate to experience them and see them firsthand. And I'd like to assure people that you should never wait because the most of the improvement occurs in the external devices. And so you, you know, you get the internal device and I don't expect to ever change my internal device. You know, I have one of the early internal devices, but it's designed to allow these kinds of improvements to work with it. And I think the the all the cochlear implant companies design their technologies with that in mind.

Carrie: [00:23:41] Yeah. Which is a great commitment for. All of the companies to have the end user that we can all benefit from that. And so I have I want to go back to one question to when you first got activated, and I know you said the sound awareness was one of the first things that you really recognized. Was there anything that you did like informally or formally to help with getting used to the cochlear implant? The sound.

Donna: [00:24:14] Um, so I think, you know, I think.

Donna: [00:24:17] Initially you mean how did it how did I get used to the sound? Is that what you mean?

Donna: [00:24:21] Yeah.

Carrie: [00:24:22] So I know, like, for me, I ended up doing training, some auditory training and just different things like that to get used to hearing more with an electronic signal rather than an acoustic signal.

Donna: [00:24:37] You know.

Donna: [00:24:38] In those days I they didn't actually. Give therapy to adults. And I asked for it and.

Donna: [00:24:50] They said.

Donna: [00:24:51] I still remember them telling me your life is your therapy.

Donna: [00:24:59] And so I you know, I was sort of push on. And I said, well, you.

Donna: [00:25:03] Know, you can listen to books on tape and stuff like that. So my son, who at the time was a little kid, when was, you know, what can I do? What can I do? You know that? And so he used to read me books.

Donna: [00:25:18] So he would be great on tape.

Donna: [00:25:21] But my my child. So he you know, he did that. And and I think I, you know, learning.

Donna: [00:25:28] To use the.

Donna: [00:25:29] Phone initially, particularly with the first sound processor, which didn't have the the depth and capability of the ones that came after I used to practice. And and my mom, who was so anxious for me to learn to use the phone, would would work with me on most nights. You know we would 10 minutes or 15 minutes. And you know, in the way you get the phone a lot of times is you, you, you work with someone that you're not embarrassed to, to make mistakes with and you pick a topic. So you say, you know, the topic today is blotch. And so you have a known set of topics that you'll be talking about. And so we did that, you know, and then if I, you know, would miss a word three times, then, um, you know, she'd figure out another way to, to say it for me. Um, I mean, now there are materials that we give people and there are some really nice applications, both for phones and for computers. Angel Sound is one I always tell people to use that I really like the CI companies all have, um, materials that you can use. Um, I think I, I wish that more adults did have access to, um, to professional therapy. And we, we actually promote that and have materials on our website that encourage people if they feel they would like it to look for a speech language pathologist or someone who provides auditory therapy. Adults typically don't mean a lot. Some people might, but I think everyone could benefit from someone to help them initially. Um, if only to say here's some ways to practice. You know, here's the things that you, you can do to, to practice. And so my practice was, was in fact listening to people because I was, I was in a workplace setting. Um, and then, you know, having my son read me books and, um, you know, there really wasn't, there wasn't that much that we were doing for adults in those days. There really wasn't.

Donna: [00:27:56] Yeah. But no, that was a great.

Carrie: [00:27:59] Way that you kind of figured it out for yourself to habilitate or rehabilitate your hearing and by listening with your mom and your son.

Donna: [00:28:11] Yeah. And and I did use assistive.

Donna: [00:28:14] Listening devices in concert with my implant. Um, and at the time, I was working for an organization for people with hearing loss. So we used. An induction loop for board meetings and staff meetings. Et cetera. So that was helpful to me as well. I had that, you know, the sound coming from the speaker directly into my sound processor. And and that's definitely a better way to listen, you know, if people are going to the theater or whatever and and they don't have captioning which some theaters do have or they don't have an assistive device or the assistive device isn't working very well, which sometimes happens. Um, but it is a good way to get a cleaner signal into your technology, whether it's a hearing aid or a cochlear implant.

Donna: [00:29:16] Um.

Carrie: [00:29:17] Yeah. So thought would kind of go into some of your professional experiences as well. You were talking about being at a board meeting and it being looped and using assistive technology. So I thought that was a good segue . Anyways, I know you've been a fierce advocate in both the nonprofit and the for profit arena. Can you share a little bit how you got started in these different arena before coming to which we are going to get deeper into in a moment?

Donna: [00:29:49] Well, you know, honestly.

Donna: [00:29:52] I fell into it literally. I thought I would do it for a few years and go back to what I was doing. I didn't think that I would stay in this for most of my adult working life. Um, so I took the job at what was then called self-help or hard of hearing people. And it was at a time when this technology was was really rolling out, you know, and so it, it, it was sorry, my phone went off. Okay.

Donna: [00:30:35] Did you hear that?

Donna: [00:30:36] I did. But it's all good. It's real life, right? We both heard it.

Donna: [00:30:44] It came into my technology, so I just turned it off. Um.

Donna: [00:30:52] What was I saying? I was talking.

Donna: [00:30:54] About You.

Carrie: [00:30:55] Got into.

Donna: [00:30:56] Self-help? Yeah.

Donna: [00:30:57] Yeah. Being in a place.

Donna: [00:30:59] Where I could promote cochlear.

Donna: [00:31:00] Implants.

Donna: [00:31:01] You know, and it was an early time in the rollout. And at the time there was just one company and other technologies were, you know, about to, to roll out. But it was also a time when we were promoting assistive listening devices. And and it was also right after the passage of the Americans with Disabilities Act, the ADA. And so that provided a lot of a lot of mechanisms for us to promote access for people. And I served, as you said, when you read read my bio, I served on the access board, which is a federal agency that looks at access for people with disabilities, all disabilities. And so the ADA had been passed and we were looking at what the regulations should be to enhance access for for people. And, and being that I was deaf and used….inaudible..Did in in acoustics, in classrooms, in assistive listening devices, in alerting devices, in hotels and other places so that when you go to sleep at night and there's a fire in the hotel, there's an alerting device to let people know that something's going wrong. So it was really exciting for me to have that opportunity early on after the ADA was passed and and be part of that. And then the other thing that was going on at the time was we were rolling out cell phones as you know, them today. Digital telephones were coming out. And up until then, the the mobile phones that we had were analog and they didn't interfere with hearing devices. But the the first digital wireless phones that came out, if you were standing near them and wearing either a hearing aid or a cochlear implant, you got a big buzz. And so we were very involved in those issues and worked with the Federal Communications Commission to really force. And that I have to say, it was it was they did not want to go along with this, but to get the manufacturers of cell phones to be thinking about how they were going to harden their devices so that people who were using hearing technology could use them. And and there was a rating scheme that we initiated so that if you were going to get a cell phone, you could look on the box and see to the extent to which it was usable by someone who was using hearing technology.

Donna: [00:34:19] So that was exciting to be involved in that and to be in a position to affect the availability and usability of those wireless phones then and now. And and so I have to say honestly that I, I don't find that my cell phone is particularly compatible in Telecoil. Um, it, you know, I, it's not an area that I work on anymore, but I'm not sure how successful we've been in the long term. And I don't use my cell phone in Telecoil. I don't have to because I have Bluetooth or I can hold my phone up and and couple acoustically, although I prefer to use some other mode of getting the sound in directly. But we, you know, we were involved in that. And so it was really, you know, it was really rewarding for me to see, um. Our advocacy in combination with our governance system in this country can really provide appropriate access for people with disabilities. And that was true also for children. You know, with the rollout of IDEA and thinking about acoustics in classrooms, which was another issue that that I was involved in and in terms of how we were going to include acoustics in classrooms as part of the ADA. So, um, you know, there's, there's some of the things that I was really excited to be involved in and to be able to affect.

Donna: [00:36:10] Yeah.

Carrie: [00:36:11] Well, I'm grateful that you were involved in all of that because I personally use all of the things that you were advocating for, whether it's acoustics or like you said, Telecoil or making sure phones are more compatible and things like the fire alarms and hotel rooms, like things that people don't think about unless you're really in the shoes of someone that is living that life. And just to kind of go back how I feel, like you said, you fell into it. But it takes a lot of courage. And to get to the point where you can advocate for what everything that you're advocating for as an individual that's deaf and hard of hearing. How did you get to the point where you were like, Yes, I'm going to work for these agencies and government that is advocating so strongly?

Donna: [00:37:06] You know, I have to think.

Donna: [00:37:07] That the experience that my father of my father and even though I didn't know that he at the time that he had retired because of his hearing loss, I knew how he struggled. You know, And I, I recall being.

Donna: [00:37:27] I'm in a store somewhere.

Donna: [00:37:29] And he didn't understand what people were saying. And and at that point, I had nearly normal hearing. So I would help him and support him. So and I certainly remembered how my grandmother struggled, you know, and how left out she always was. Um, and for me at that point, you know, had I not received a not had the ability to get a cochlear implant, I wouldn't have been able to continue to work. And an environment in which people use spoken language and listening and talking. I would have had to have done something different. I would have had a very different life. Um, so, you know, I really did just fall into it. Carrie, I, you know, I, I'm a fast learner.

Donna: [00:38:26] Um, and, and.

Donna: [00:38:28] What tends to happen when I'm in something new, I.

Donna: [00:38:31] I.

Donna: [00:38:31] I spend a huge amount of time just learning about something new, and I enjoy doing that. And, and so I, I learned a lot. I was lucky that I had people around me who were more experienced, um, in the, in the advocacy side of things. I did know government because that's what I was trained in. But, but not so much for disability, more related to urban planning and processes for particularly local government and states. So I had that experience that, that fueled what, what came afterwards. Um, and, and I think that helped me. I had very good training for my, for my graduate work, you know, So, um, that, and, and they also part of my graduate program was they taught us a lot about how you collect data, how you do survey research, how you interpret data and how you present it. And, and so that has always been a part of what I have done in this field. And so although I was I was.

Donna: [00:39:45] Trained.

Donna: [00:39:47] In terms of working in and for government, it definitely was transferable. You know, in terms of what I'm, I'm, I'm doing now. Um, I Feel like.  Also the fact that I grew up with this in my family and then experienced it myself.

Donna: [00:40:11] It gave me a window into what it was like and how important it was for for us, those of us that work in this field to ensure that people have what they need to have a level playing field.

Donna: [00:40:25] You know, and, and that's you know, that's kind.

Donna: [00:40:29] Of an underpinning of this country.

Donna: [00:40:31] And it's not.

Donna: [00:40:32] Necessarily the case everywhere in the world. I've worked in many places around the world. And some countries, they don't.

Donna: [00:40:41] Have that same perspective about ensuring that people with disabilities do have a level playingfield.

Donna: [00:40:49] And it's one of the the special things. And, you know, we have a legal system that supports that. And sometimes we we don't necessarily have everything in place to make it work the way it's supposed to. Um, and, you know, people sometimes say to me, you know, well, the laws are there. Why, why isn't it working? The laws are the first, you know, that's kind of the first floor. And then we have to come in and we have to enforce those and figure out how it is that we're going to make those laws work for children in school and wherever they go. And for those of us who are adults.

Donna: [00:41:29] Um, I'm a.

Donna: [00:41:31] Huge fan of theater.

Donna: [00:41:33] And, and.

Donna: [00:41:33] I live outside of Washington and my husband and I love the Kennedy Center and they are so great at accommodations for for people with disabilities.

Donna: [00:41:46] Um.

Donna: [00:41:47] The Kennedy Center has an assistive listening device that's in place with somebody who's staff sit at every single performance. You pick up your assistive device and then every show that they have has at least if it's a major show, there's at least two showings that have captioning on the on the stage. And now the latest thing they have is if you go at a time that they're not going to have the captioning on the stage on the box we call it, they'll have a have an.

Donna: [00:42:25] Ipad on your seat. And you.

Donna: [00:42:28] You can have captioning.

Donna: [00:42:30] At your.

Donna: [00:42:30] Seat on the iPad.

Carrie: [00:42:32] It's amazing.

Donna: [00:42:33] It is amazing. And and you know.

Donna: [00:42:36] I don't know that there's any place else in the world that is so accommodating in that way. If somebody uses sign language, they have ASL performances for people. I notice they have had had.

Donna: [00:42:50] A cued speech performance.

Donna: [00:42:53] At the show that we saw last week. We saw Wicked. We took our my niece to see Wicked and. We were at a show that was a caption show, but they also had, you know, other forms of communication access. So, you know, it's been really amazing for me to have been part of the rollout of that, to help everyone and to enjoy it myself.

Donna: [00:43:25] So I think that's one of the exciting.

Donna: [00:43:29] Things that that I've been that I've been involved in that I'm very proud of.

Donna: [00:43:33] To contribute to.

Carrie: [00:43:36] Well, you should be very proud. First of all, and I'm grateful for all of that, too. And I love how you were able to build your personal experiences of your own family and your own journey and put it to practice and passion for everything that you do. Because I don't think anything gets done unless you have somebody that is very passionate and purposeful behind what is going on.

Carrie: [00:44:04] So obviously that is you and that is kind of a great way to talk about the American Cochlear Implant Alliance. I wanted to ask you, you have been a starter of that Alliance, but how did this idea come to fruition and how did it get started?

Donna: [00:44:24] Yeah, that's a really good question.

Donna: [00:44:27] I think for some time, people in the field, professionals in the field specifically felt that there wasn't enough focus on cochlear implants and the organizations that focused on hearing loss, the the ENT organizations, audiology organizations and the organizations for speech language pathologists, it get lost. You know, CI is a small part of what all of those professions that I've just mentioned do and hearing aids tend to be the dominant hearing technology that we think about. So it was felt that there needed to be. An organization that just focused on cochlear implants. And so the organization began with a group of of leaders from across the continuum of care. And it was always the case that this organization had physicians and audiologists and SLPs and educators and psychologists. So people who work with children and adults and they all came together and they. They they incorporated as a nonprofit organization. They wrote a mission statement which still stands today that basically focuses on improving access to cochlear implants for for people who need them through research, advocacy and awareness. So that's still our our mission statement. We very much are across those three areas.

Donna: [00:46:18] And and we didn't really know how that was going to play out. We had a mission statement and we had.

Donna: [00:46:25] People who knew that things needed to happen to improve access. Um, so that was all going on. And then.

Donna: [00:46:35] IvLeft the company that I was working for in September of 2012 and.

Donna: [00:46:44] Applied for the position.

Donna: [00:46:46] Along.

Donna: [00:46:47] With a number of other people. And I was selected and began in, in mid November of 2012. So we kind of got started about then, you know, some of the groundwork had been laid. We had a website that we really greatly expanded. We didn't have we weren't due to have a meeting until 2014. So we very quickly put together a small meeting in 2013. And then since that time we've had a conference every year and it's sort of a unique conference because we focus on clinical research and CI and things that support that. There's really no other conference that looks at clinical research and has all of those.

Donna: [00:47:34] Components in it.

Donna: [00:47:38] And we are we have funding that comes from our memberships. And right now we have over 2500 members.

Donna: [00:47:49] Mostly clinicians.

Donna: [00:47:50] But also individuals who have cochlear implants or parents or family members and military members. So we you know, we have an increasing number of of of.

Donna: [00:48:03] Those.

Donna: [00:48:04] Categories of people who care about CI as well. And and then what we began To be very involved in was the advocacy side of this field.

Donna: [00:48:17] And interestingly, when I first came.

Donna: [00:48:21] The Affordable Care Act had just been passed and was rolling out.

Donna: [00:48:25] And we were very concerned at that time that the ACA marketplace.

Donna: [00:48:30] Plans.

Donna: [00:48:31] Might not include cochlear Implant coverage on it.

Donna: [00:48:34] And so we this tiny organization at at this point with 50 states, with multiple programs in each state on the marketplace. And I was like, gosh, how are we ever.

Donna: [00:48:51] Going to do this?

Donna: [00:48:52] And so we came up with the.

Donna: [00:48:54] Idea of having state champions.

Donna: [00:48:57] And so that was the first thing we thought about was state champions, was having people who we could train on how to, you know, go and look at these plans and the state marketplace and and then know how to work with their states to ensure that the coverage was there for for cochlear implants.

Donna: [00:49:20] So that was the first thing we did.

Donna: [00:49:22] On the advocacy side. It was it was so cool.vThat we had people who who had never done advocacy before but wanted to make sure that their patients had access To Cochlear implants. So we started with that and then we we got into, you know, a number of issues.

Donna: [00:49:45] That were important. We've been very.

Donna: [00:49:46] Involved in the.

Donna: [00:49:48] Early Intervention Act and the rollout of those services for for children and.

Donna: [00:49:56] Families.

Donna: [00:49:58] We've been very involved.

Donna: [00:49:59] In.

Donna: [00:50:01] Medicaid at the state level to ensure that those services cover both children.

Donna: [00:50:06] And adults. And we're.

Donna: [00:50:08] Actually working on a number of states right now that currently don't cover cochlear implants in adults under.

Donna: [00:50:13] Medicaid.

Donna: [00:50:14] So we're working to expand that all.

Donna: [00:50:16] All states covered children.

Donna: [00:50:18] There's been some issues with the way.

Donna: [00:50:20] Children are covered.

Donna: [00:50:22] And I think one of the the successes that I'm very proud of relates to the expansion of coverage under Medicare. So Medicare has covered cochlear implants for a long time, but the problem was.

Donna: [00:50:39] That the.

Donna: [00:50:40] Coverage didn't keep up with private employer.

Donna: [00:50:45] Plans. And so very.

Donna: [00:50:46] Very early on in the organization's history, we decided we wanted to work on that and we were able to get the Centers for Medicare and Medicaid Services to agree to.

Donna: [00:50:59] Cover.

Donna: [00:51:00] Cochlear implants.

Donna: [00:51:02] At a in a different way and an expanded.

Donna: [00:51:04] Way for individuals who are part of a study that we ran. And so we ran That.

Donna: [00:51:11] Study took a long time and then finally in.

Donna: [00:51:15] September.

Donna: [00:51:17] Of last year.

Donna: [00:51:20] We we did get the expanded coverage under Medicare, which was huge.

Donna: [00:51:26] It just makes it so much more available for people 65 and up who need this technology but have been prevented from getting it because they had too much hearing, you know.

Donna: [00:51:40] Which was, um, you know.

Donna: [00:51:44] Just not enough to be able to, to talk on the phone or negotiate the world. So we work on a number of issues like that. We work on awareness.

Donna: [00:51:56] We've recently started giving. Webinars for for parents and for adults and.

Donna: [00:52:06] Family members who want to learn more about particular topics.

Donna: [00:52:09] So coming up next Tuesday, we have a Tuesday talk, but we have these once a month on Tuesdays on different topics. So the one that's coming up is on the surgery, which Sometimes people have.

Donna: [00:52:24] Concerns about, and we record those and they're available at any time so people can come on.

Donna: [00:52:32] And and.

Donna: [00:52:34] Learn more and they're free and they're designed to be for a consumer parent.

Donna: [00:52:41] Audience.

Donna: [00:52:43] And are those do.

Carrie: [00:52:44] You need to be a member of ACIA to participate or hear the Tuesday talk?

Donna: [00:52:51] No, they're open to anyone. Okay.

Donna: [00:52:53] We, of course, always love for everyone to be a member, but we don't ask. And honestly, we don't care. We're just really trying to get the information out as broadly as we can. And we also try to reach the professional hearing health community that is outside of the CI world so that they know to refer a patient. And just like I was so lucky to have had Susan, this was so many.

Donna: [00:53:28] Years ago three decades ago. Just think she she realized.

Donna: [00:53:32] At that time she wasn't.

Donna: [00:53:33] Involved.

Donna: [00:53:34] In providing CI services but she saw how much benefit they provided for her patients. And so she.

Donna: [00:53:43] She was the one I mean, I probably would have stumbled over it at some point, but she probably saved me 3 or 4 years by pushing me in that direction. And so I you know, I feel like I had people who supported me early on so that I could.

Donna: [00:54:07] Have.

Donna: [00:54:08] The benefit of this. And so we we try to reach.

Donna: [00:54:11] Those general.

Donna: [00:54:13] Practitioners so that people know to tell people that they could benefit from a different kind of hearing technology at this point. And even if they go in and have an  Evaluation.

Donna: [00:54:26] And learn that they're not right, then a candidate, I think it's important that people know that they have that hope if their hearing declines.

Donna: [00:54:34] That they have something that will allow them to get better rather than continue to get to get worse.

Carrie: [00:54:41] Yeah. And I know that.

Carrie: [00:54:42] You all of that information is very important. And ACIA has put together a variety of task forces to that have come up with pretty much some papers that individuals or clinicians can utilize too. Can you share a little bit more about the task forces and how that impacts that general hearing health care.

Donna: [00:55:11] Sure.

Donna: [00:55:12] And I should also say a lot of this is on our website.

Donna: [00:55:15] So if people want more.

Donna: [00:55:18] Information way beyond from what we're we have time to talk about today, Carrie. Our website is acialliance.ogr

Donna: [00:55:27] And we have.

Donna: [00:55:28] Most of what's on our website is designed for people from outside of the.

Donna: [00:55:32] World. So we, for example, have I mentioned.

Donna: [00:55:38] The the state champions who we provide support and training for and they work on typically things that are right within their own states, you know, so they assemble people to help them participate in state advocacy and passing laws and changing laws, etcetera. But we, for example, had a, um, a task force that worked a few years ago on therapy for children.

Donna: [00:56:20] So what what should that look like?

Donna: [00:56:22] You know, if you have a child with a cochlear implant.

Donna: [00:56:26] Um.

Donna: [00:56:26] How many years should they get.

Donna: [00:56:28] Therapy and what sort of person.

Donna: [00:56:31] Should a family be looking for to provide that therapy?

Donna: [00:56:35] So we have a guideline that that that task force put together.

Donna: [00:56:42] To provide guidance. And it's been very helpful to families.

Donna: [00:56:45] In terms of talking to insurance about how much.

Donna: [00:56:50] Therapy their child needs and insurance companies should.

Donna: [00:56:53] Cover it. Um, and then we.

Donna: [00:56:55] Have recently had four task forces that worked on candidacy for different populations. So there was a task force that worked on how you should.

Donna: [00:57:09] Determine candidacy.

Donna: [00:57:10] For  An adult with Bilateral deafness and for a child with bilateral deafness. So those task forces each came up with Guidance.

Donna: [00:57:23] And the pediatric one has been published and is on Our Website.

Donna: [00:57:28] And it's, um.

Donna: [00:57:30] It was a peer reviewed paper that appeared in ear and hearing, which is a scholarly journal and it's, it's open. We we paid to have it be open access.

Donna: [00:57:41] So that's.

Donna: [00:57:42] On our our website the one on adults will be coming out at some.

Donna: [00:57:45] Point in the not too distant future.

Donna: [00:57:48] And then we had task forces that looked at.

Donna: [00:57:52] Cochlear implants.

Donna: [00:57:53] In children and adults who have single sided deafness.

Donna: [00:57:58] So it.

Donna: [00:57:59] Used to.

Donna: [00:57:59] Be that we would provide SSD only to people who had.

Donna: [00:58:03] Bilateral deafness.

Donna: [00:58:05] But now we're recognizing the impact.

Donna: [00:58:08] That.

Donna: [00:58:10] Single sided or unilateral deafness has on a child's ability, for example, to to learn in the classroom. And we've discovered that children who hear only on one.

Donna: [00:58:25] Side have much more difficulty in in an educational setting.

Donna: [00:58:32] And in negotiating the world in general. So it's now.

Donna: [00:58:37] Become.

Donna: [00:58:39] Um, recognize that those.

Donna: [00:58:41] Children should get cochlear implants and they should get them.

Donna: [00:58:44] As early as possible. As soon as we identify that they have.

Donna: [00:58:51] Deafness in that ear. And there are some conditions in which that's quite common. If a child is born.

Donna: [00:58:58] With CMV, for example, unilateral deafness is.

Donna: [00:59:02] Is often one of the effects. And in adults, people sometimes.

Donna: [00:59:08] Either develop unilateral.

Donna: [00:59:12] Hearing loss from.

Donna: [00:59:14] Exposure to noise.

Donna: [00:59:16] Or disease or whatever, and sometimes it just happens and they they don't know why it's happened. Um, and adults often feel, um, very impaired by.

Donna: [00:59:30] Having hearing only.

Donna: [00:59:31] On one side.

Donna: [00:59:32] So that one as well. We have a.

Donna: [00:59:36] Guideline in terms of determining how to assess and manage somebody who has um, deafness on one side.

Donna: [00:59:47] So those are four that we've worked on very recently. And then a.

Donna: [00:59:52] New one that Carrie and I are working on.

Donna: [00:59:56] Um, we'll, we'll be looking at.

Donna: [00:59:59] Um.

Donna: [01:00:00] You know, what are the, the.

Donna: [01:00:03] The benefits.

Donna: [01:00:04] Of.

Donna: [01:00:05] Providing access to sound for children, you know, why is it beneficial and, um, you know.

Donna: [01:00:15] How can we have messaging.

Donna: [01:00:17] That allows the public to understand.

Donna: [01:00:21] Why that's important and we haven't really done a good job on that. I think people don't really understand why it's different to have hearing. You know, why isn't why isn't it enough to just provide a child with access to to sign language if if they're deaf? And so sorry. Um, that's the phone line for the organization.

Donna: [01:00:54] Um.

Donna: [01:00:55] But anyway, so.

Donna: [01:00:57] Um, you know, that's another example of something that where we have a range of people.

Donna: [01:01:03] Involved who.

Donna: [01:01:05] Understand.

Donna: [01:01:07] Um, the topic and, and Carrie and I actually are the.

Donna: [01:01:13] The task force chairs for putting that together. And we're going to bring together an illustrious group of professionals who work with children.

Donna: [01:01:24] And come up with what we hope will be messaging that better explains.

Donna: [01:01:30] The.

Donna: [01:01:31] Benefits of having access.

Donna: [01:01:33] To sound. I think I've said that right, Carrie, you.

Donna: [01:01:36] Should chime in because.

Donna: [01:01:37] You're part of this.

Donna: [01:01:39] No, no.

Carrie: [01:01:40] I think you said it well. And just again, having a message that really supports, um, what, you know, the access to sound and how that access to sound can really help with language. And that is, you know, something that we want to ensure that others are fully informed about so that families who are making these decisions have all of the knowledge that they need in order to know what's best for their own child. So whether that's a spoken language or a sign language, having that information is going to be critical for our families. And like you said, we haven't had a, a, um, I guess a clear message. So coming up with a clear message is going to be important. And hopefully I didn't lose you, Donna. I don't know if it was my end or your end.

Donna: [01:02:42] You're back. I'm back. I think.

Carrie: [01:02:45] I don't know where. I know. I got frozen. Could you still hear me? Or was it.

Donna: [01:02:51] Was it gone?

Donna: [01:02:53] Did you Until just now.

Donna: [01:02:55] You were. You were Your face was frozen. And I wasn't. I wasn't hearing.

Donna: [01:03:00] You.

Donna: [01:03:01] Okay, well, maybe.

Carrie: [01:03:02] We'll try to. I'll just try to summarize. I think I was just saying, having a clear message for families, whether they are using a visual language or a spoken language, having all of the information and having a clear message and information is going to be important. So that was kind of the reason this new task force was put together, and I'm looking forward to working with you on that one.

Donna: [01:03:30] Yeah, I'm and.

Donna: [01:03:31] I'm I'm looking forward to working with you as well. And it Carrie been so involved in the organization as, as a state champion.

Donna: [01:03:40] And and.

Donna: [01:03:41] Also we have another network for adults.

Donna: [01:03:47] And.

Donna: [01:03:47] Parents who are who have or have family members who have cochlear.

Donna: [01:03:53] Implants.

Donna: [01:03:54] So that we have messages that are coming.

Donna: [01:03:57] From.

Donna: [01:03:58] People who have first firsthand experience, just as I do and.

Donna: [01:04:04] Carrie does. And and it's so.

Donna: [01:04:06] Important that.

Donna: [01:04:07] People hear from us so that it's not professionals.

Donna: [01:04:14] Talking about this technology and the experience of.

Donna: [01:04:17] Having the technology.

Donna: [01:04:19] But it's it's also those individuals who speak for themselves. So we're we're grateful to have people.

Donna: [01:04:27] Like Carrie be involved as professionals and as people who understand the technology themselves. And I think that's what's really unique about the organization is it's one of the few, if.

Donna: [01:04:43] Not the only organization in the field that has professionals from across the care continuum and also from the recipient community as well. And I've been very excited to be part of it.

Donna: [01:05:01] From from the start and watch it grow and, and meet all these amazing people.

Donna: [01:05:09] That I have.

Donna: [01:05:10] Had the privilege to know and work.

Donna: [01:05:12] With.

Donna: [01:05:13] Over the over the  years. You know, it's funny, someone once asked me someone once asked me.

Donna: [01:05:20] You know, if I could not be deaf, would I prefer to not be deaf?

Donna: [01:05:27] And and I thought for a minute and I said, Well, but if I hadn't been deaf, had all these experiences that I've had in life, you know, all the people that I've met because I was deaf. But I'm certainly glad that I was able to get a cochlear implant so that I could hear

Donna: [01:05:49] And.

Donna: [01:05:50] And travel the world and be able to talk to people in different settings. So I guess I have the best of everything.

Carrie [01:05:57] You do.

Carrie: [01:05:57] And I'm just grateful that you have been with the American Cochlear Implant Alliance.

Donna: [01:06:03] from the.

Carrie: [01:06:04] Beginning, because I know it has grown to be such an organization that supports professionals across the hearing health care span, as well as consumers and families who are thinking about it on that journey. It's kind of a one place to get a lot of great information. And as you said, initially, we have a lot of great organizations that support speech and hearing or our needs, but they don't focus in. And so to be able to have one place where we focus in for a multitude of professionals and and individuals consumers is Such a benefit for for all. And then, like you said, for the advocacy piece as well as the informational piece and the research part of things. Having that dedication, you have a focus and that's what your focus is.

Donna: [01:07:03] Right? And it also provides.

Donna: [01:07:06] Us with a with a mechanism to support those larger organizations, which we do. So alliances in our name. And that means, you know, that we bring all of those other organizations together. We work very closely with all of them.

Donna: [01:07:22] Um

Donna: [01:07:23] Know, and, and try to make it so it's not competitive. But so it's, you know, it's supportive and we do things together with them.

Donna: [01:07:32] To.

Donna: [01:07:33] Everyone's advantage. So I think that's.

Donna: [01:07:36] The.

Donna: [01:07:36] The, the other really great thing about the approach that.

Donna: [01:07:39] We've taken to.

Donna: [01:07:41] Really try to collaborate with. A range of different organizations. We interviewed a bunch of different organizations recently for an update of our strategic plan, and we.

Donna: [01:07:53] Met with.

Donna: [01:07:54] The CMV Foundation and with hands and  voices.

Donna: [01:07:59] And.

Donna: [01:08:00] Consumer organizations, as well as the professional.

Donna: [01:08:03] Organizations. And it was really neat to hear.

Donna: [01:08:06] You know, what they thought we should be doing.

Donna: [01:08:10] And.

Donna: [01:08:10] How we're contributing to their work. So the experiment worked.

Donna: [01:08:17] I think, and I'm very proud of what happened.

Donna: [01:08:21] And it has flourished amazingly.

Carrie: [01:08:24] And yeah, as we kind of wrap up, is there anything that I missed that we didn't talk about?