Healthcare with Hearing Loss: Improving Communication Access in Medical Care, Live from FHH 2026

Welcome. I’m Shari Eberts. And I’m Gael Hannan. And we are the co-authors of “Hear and Beyond: Live Skillfully with Hearing Loss.” For anyone living with hearing loss, one of the most challenging and stressful situations that we face is the process of accessing healthcare. When we’re dealing with any pain or disease or any type of emergency health issues, good communication is crucial between the patient and the healthcare experts. But we have hearing loss, and so our communication with the doctor, the nurse, or any emergency worker is almost always affected, and it’s stressful, and often it feels as if our hearing drops through the floor. And sometimes we’re offered sign language interpreters, even when we don’t sign. And many times no accommodations are provided, even if we request them well in advance. And when we try to take things into our own hands, maybe we use a speech-to-text app on our phone, for example, we’re met with resistance. A lot of healthcare providers don’t understand how they work or what liability they’ll face. And the transcript is not always accurate, right? 15 and 50 can sound very similar. Through an AI lens. So our panelists today have experienced a lot of these challenges firsthand and are working to do something about them. They have created Health Care with Hearing Loss, which is a blog series designed to educate and support a diverse range of stakeholder groups invested in the implementation of communication best practices in health care. And the purpose is to empower every individual who lives with hearing loss to communicate easily, effectively, and safely in all medical settings. So welcome, Tony Iacolucci and Peggy Ellertson. Both are tireless advocates for hearing access in healthcare, as well as our dear friends, and we’ve worked together in the past on many advocacy projects, and we’re really excited to talk about this important topic today. So thanks for being here. Our pleasure. Thanks for having us. Thanks for having us. Oh, this is a joy for Shari and I because it’s a topic we’re very familiar with and concerned about. So we know you very well, but could you both tell us a bit about who you are and a bit about your background and how you became interested and involved in this topic? Well, I have a profound hearing loss. I have a cochlear implant and a hearing aid. My mother also had a hearing loss, as did my grandfather, so I know a lot about living with hearing loss. I became interested in this topic because I had an encounter with a provider who was not willing to work with me so that communication during our appointment would be accurate. And we’ve been very fortunate to learn from from some of the public health researchers looking at this issue. And so we’re really into the process now of understanding the problem and working on it, trying to help it get better for other people who are facing the same issues. Thanks, Peggy. Tony? And for me, also have profound hearing loss and wear one cochlear implant. But before I got my implant 5 years ago, I gradually lost my hearing but lived with with complete deafness for 16 years. And in the course of that, I went through 2 years serving as a caregiver to a family member who was battling cancer. And as much as I tried, although at the time I was not aware of my rights and the kind of path that I could take to try and get what I needed to communicate. So consequently, for 2 years, I basically had no communication access. So I was sitting with, you know, all medical staff talking about life and death matters, and I could hear absolutely nothing. So when I lost my brother, I just made a promise to myself that I was going to do everything that I could to fix this problem. And that was about 12 years ago, and we still have a long way to go, but I feel hopeful that we’re, we’re definitely making some progress. Well, I think this issue is very lucky to have both of you behind it and looking at it because it resonates so deeply with you both, but also with so many people with hearing loss. It’s a very common experience, unfortunately, to have these additional challenges in healthcare situations where we’re already dealing with a challenging situation irrespective of the hearing loss. So I was hoping you could talk about just some of the specific barriers that you see. You said you’re sort of researching the problem. What are those specific barriers to communication communication access that are sort of already embedded in the system that we need to address? My favorite question. This is an area that I’m so interested in because once we began to learn from particularly the public health researchers at Disability Equity Collaborative, the drivers of this problem started to sort of emerge from the chaos. So the first one is a really common factor in all communication breakdown, and that is a lack of awareness. And I’ll give you an example of what I mean by that. I, my, some of my providers certainly know that I have a hearing loss. I have told them I have a hearing loss. It’s in my medical record. I have a cochlear implant that’s very visible, as is my hearing aid. But the awareness of what that means in— during this encounter is the piece that is missing. And it’s— I think of it as something that’s also present at the Thanksgiving dinner table when your relatives know you have a hearing loss, but things don’t slow down and accommodations aren’t made. So it’s actually a very powerful barrier that impacts much of the slow progress in this area. A second related barrier is the fact that in general, providers are not given any kind of robust training in the care of patients with disabilities. And I know that many nurses and probably medical doctors certainly have mini trainings in the form of videos that they watch for CEUs and that kind of thing. But that’s not the same thing as a sort of full-out immersion in the experience of hearing loss and why this is so important. Certainly there’s a lot of public health data that sort of suggests that providing accommodations would not be a bad idea. And then a third and very important barrier is the fact that healthcare environments are plagued with many, many competing needs, and they’re busy places. Sometimes they’re harried places. And so the fact that there isn’t a lot of data that shows that accommodations improve health outcomes for people with hearing loss, this issue of competing needs, it doesn’t rise to the level of let’s take care of the people with hearing loss. So those are the 3 persistent drivers, and what we really believe is that once you understand the problem, you become more skillful in advocating, you become much more strategic, and that’s sort of our whole thing. So when you say that, do you mean that when we become more understanding of the situation, we the person with hearing loss, that we’re the ones that, that have to drive this. Is that what you’re saying? It’s a really good question. So there is a lot of federal— there are federal mandates that say we should be having accommodations when we see our providers. But the fact of the matter is that patients really do have a lot of power. And we think that understanding how the healthcare system operates equips the patient with the kind of approach that involves having a mindset that has to do with the long game. This is not something that’s going to change overnight. That involves creating a conversation with providers about the experience of hearing loss and the kinds of things that will matter, not once, not twice, but every single time. And certainly, and Tony can talk about this, the use of the Communication Access Plan, which is a masterful, quite simple document that patients can use and submit to their physicians, is very, very important. And Tony, do you want to comment on that? Sure. So we sort of see two pathways in trying to scale some of these barriers. So one of those is the patient pathway, and then the other is sort of the systemic pathway. And the ADA says it’s up to the patient to self-disclose and to ask for what they need. Peggy and I, along with many of our colleagues that we collaborate on through Healthcare with Hearing Loss, do not agree with that. We feel that it should be up to the hospital to ask patients if they have communication issues, and if so, what they need to solve those problems. I always say when I talk to providers, if you ask me a question about allergies or being allergic to medication or whatever, and I mishear, that’s gonna cause a big problem. So I would not want to be a provider and not be certain that my patients were understanding what I said. So one of the things that we’re trying to do from a patient perspective, you know, there are different levels of involvement and comfort levels that people will— to get involved in. So ultimately, we would love to have electronic healthcare records ask and tag patients, but we’re not there yet. So to use this simple communication access form takes probably 5 or 6 minutes to fill out, to ask what technology you have, what devices you need. And at the lowest level, we’re asking patients just fill it out, keep it on your desktop, and every time you have an appointment, put it in your portal. If you are more comfortable, you go beyond that and you follow up. You find the patient experience people or the disability coordinator and say, am I going to get this? I’ve requested it. And then if you don’t get it, you pursue that avenue, whether it’s a complaint or something else. But we also know that there’s a lot of discomfort It’s, you know, people who hear well don’t remember information in a stressful medical encounter. You know, there’s the stigma in not wanting to admit that you don’t understand something. There’s the thing of, “I don’t feel well. My stomach’s really hurting. Let’s just fix this problem. Let’s not worry about getting me a speech-to-text app.” And so many times I thought, I was understanding and I was not. And now I’m using the communication access form and I’m getting technology and mostly I can hear with my CI, but I’m realizing that I’m looking down often, so I’m not understanding everything that I thought I was understanding. So it’s about safety and everything else. And one more thing I will say about just the CAP, Communication Access Plan, is Johns Hopkins recently came out with a slide That said, there are 72 million people with hearing loss. So Peggy and I started to fool around with that number and we said, okay, what if 20% of the people with hearing loss submitted a CAP form for their appointment once a year? That would generate 14 million forms that would go to a hospital and say, this person has hearing loss. Okay, increasing awareness. So we’re, we’re kind of asking people to jump on this, and we would sort of like to have a campaign that says, be the 20%. So that’s a starting point. So I guess I wanted to go back a little bit to some of those systemic barriers that you were talking about in terms of the awareness, because I think part of the problem, especially If it’s on us, right, the patience to self-advocate, a lot of us don’t necessarily know what we would advocate for, right? We don’t necessarily know that there is CART or there is this CAP or there are speech-to-text apps. And that sort of, to me, goes back to that sort of lack of awareness. So what can we do about that as advocates? Are there certain ideas that you have or programs that are in place that are going to help educate all of us about this? Obviously doing podcasts and conference discussions like this, but anything else that really will move us forward down that path? Well, I think there’s a lot out there about technologies that help us to function. And it’s certainly, I mean, it’s something for us to think about that there could— we can have a designated spot on our website perhaps on our resources page where people can find that kind of information. I always tell people, read Here and Beyond and then do what it tells you to do. I know that, Peggy. I know. Those of us who know that technology makes all the difference use it in lots of different situations. So it’s not specific to healthcare that it’s relevant. And maybe it goes to what happens in the audiologist’s office. In terms of what the patient learns about self-efficacy and making healthy decisions, making healthy choices, and sort of getting in there and getting in the game and adopting all of these devices. And then the next layer in terms of healthcare is working with your system. And unfortunately, even though there are so many robust mandates that require practices to provide us with what we need. They just, in general, tend not to do it. And so 72 million of us, we have to sort of think of this, I think, as a very long-term robust project with lots of careful record-keeping and good communication with our healthcare systems And then I think we could get it done. I think it’s so important through all of that, and as talking about self-efficacy, is that those of us with hearing loss need to understand that we have the right to communication. We have the right to ask. Too often, if you’re in a doctor’s appointment or in a situation, you don’t want to pull the focus away from your, your your sore back or your worry about your disease, and/or you don’t want to bother these health professionals that we have on pedestals. And I think it’s so crucial if we don’t have the confidence to follow through, because it does change in the moment. Something could— you could have a physician who knows that you have hearing loss, but in the organic moment of back and forth between practitioner and client, it can fall by the wayside. And we need to feel comfortable going, “Excuse me, can you, you know, eyes back to me,” or something like that. Yeah. I think— Go ahead. I think one of the things that, you know, I mean, I can remember I was not aware at the time that as a companion, that’s the term that the ADA uses, that I had the same legal right to accommodation as someone with hearing loss. As the patient did, as my family member did. And so there’s a big difference in how you ask for accommodation when it’s your right and how you ask for it when you think somebody is doing you a favor. And that’s where I was. In terms of technology, I think what really helps is even if you bring your phone and they’ll tell you you can’t use it, but you legally can use it. I mean, that’s a whole other thing, but If they see it, they start to get it. And some of them are really fascinated by the technology. I got, for a surgery that I had, I asked for speech-to-text and they showed up with this beautiful tablet with voice recognition on it. And it was really amazing because as it went from person to person, you know, because you see 5 different people if you’re having surgery, 10 different people, But as they’re handing it off to the next person, there’s this continuity, there’s this signal through the continuum of care. This person has communication issue, this person has a communication issue. So it’s constantly on the radar screen. So even if you just go with that, put it on your CAP, ask for it, because I wasn’t getting anything until I started to put it in writing with the CAP. But it’s a way to educate people in a very concrete way. And what Peggy said, they don’t understand what hearing loss means. They will see it. They will see it when you looking at them and then you look down to read what’s being said. So I would suggest again to use the technology itself, you know, ask for something basic, use your phone and just start showing. That’s a good way for education and awareness. What about just thinking of the way that hearing care providers are trained and educated, right? I mean, so what we’re saying is we sort of need to give them that training in real time, just, you know, show and tell basically. But what can we do just, you know, from a higher level or taking a step back level so that these providers are educated about this as they’re coming up the system? What ideas do you have that we can just start that education process in a more systematic way? Well, certainly there have been some efforts to, for instance, have patient panels talking to second-year medical students. Tony and I have done those in New York City at Weill Cornell. And it’s very gratifying medical students tend to love it. They— some of them stay in touch, and I think that it has an impact. The problem is that it’s one class in one medical school, and it’s not— it’s not a sustainable sort of wide-reaching solution. So I think we just have to go at this from every possible angle. There actually are some really interesting studies being done looking at the culture of medical schools and the presence of ableism in medical schools. And there’s a lot to learn about that. I think that in the meantime, we have to find ways to have— we are unfortunately the educators of our physicians. And I think the way that we— begin to go about having those conversations should— I think we get the odds in our favor when we’re sharing and engaging and following up and having it be a regular part of the conversation. And I think that most physicians probably welcome the information. I mean, this is also impacting them later on if it’s a— completely frustrating situation, then we get into things like filing a complaint. But I think a lot of us have been so frustrated by what is obviously something that should be happening in the provider’s office that we get angry and we complain to each other and really don’t do anything. We don’t go through the channels that we need to go through. I always have thought that if I were, or not if I were, but any sort of health professional who is going to be doing clinical work and dealing with patients would receive training on communication, on how best to reach your client regardless of your hearing ability, because so many aspects of what we need are what any patient needs. We want eyeball to eyeball, we want face to face, we want clear speech using clear communication in language that people can understand and communicating in, you know, and all the things that go into, with all the things that go into good communication. But real life happens and not everyone is a clear speaker and doctors and nurses and they’re in a rush. So all of these things, but to me it’s always been what we need is what any patient needs is clear communication. Is that trainable? You know, I don’t know. We’ve had that discussion and, you know, sometimes we’ll say, why are we dealing with hearing loss in healthcare? We should be dealing with the whole healthcare system, you know, in terms of communication because It’s important to everyone, whether you speak a different language or, you know, whatever it is. So we are really grappling with that at this point and thinking, how can we train and how can we do it in a sustainable way? And, you know, always to keep it broader, that it’s not just about the hearing loss, it’s about the communication, and that includes everyone. So it’s a big issue. And also, you know, trying as best we can to impact the system. There should be very clearly on every hospital’s website where you get aids and services, who you can email, who you contact. Good luck finding it. It’s very, very difficult. Telehealth appointments are mandated to be captioned. That’s something Peggy and I worked on. We had several meetings with one of the largest electronic health record providers, and because legally they can do it with a workaround, and that’s where everything falls through the cracks. Okay, so we actually got them to include captioning in their native build. How soon that’s gonna be out and how soon it’s gonna be available, but by all means, if you have a telehealth appointment and you don’t have captioning, request it. Request it on a CAP form. And then if you don’t have it, pursue it. And I know it’s frustrating. It just seems like it’s always us. It’s always us. But until we at least, I think, get through barrier number one, which is telling people, hey, we’re here and there are a lot of us, we’re not going to be able to do much of anything. So yeah, it does fall on us. And we had a conversation with a speech pathologist not too long ago, and she said, oh my God, you know what? You have to go through it. So ridiculous, you know. And I said, what’s the alternative? The alternative is nothing happens. And we really can’t go there. We’re not going to go there. We’re going to make it happen. And so really the purpose of the blogs is to help people understand the problem more deeply. It really does depersonalize the issue a little bit when you understand what’s driving this, and then to give people examples of the kinds of things that we think can really make a difference. And we’re hoping that You know, we can get more and more people to do, you know, it’s the same thing that you’ve done with Here and Beyond. You’ve given people mindsets and really important, very relevant tools for making their lives better. And unfortunately, it’s just going to take a lot from us, but we have to keep doing it. The disability movement is built on hard work. And so we all have to sort of roll up our sleeves and try to do some of these things. So how does one get this blog? And before I ask that question, the blog, you want this to be read by healthcare providers as well as people with hearing loss, right? So, and how would all of us and all of them access this blog? Tony? I was just gonna say, Peggy, you’re a technology— Okay, well, you can go online, you can Google healthcarewithhearingloss.com, and that will take you to our very simple, clean website. And we intentionally made it that way because it seems like every time you have to learn something about hearing loss, it’s so complicated. So you will see our blogs and our vlogs and They’re presented by a variety of stakeholders, and we hope that a variety of stakeholders will read them. I mean, we collaborate with researchers who are coming up with the data that we need to show what works and why it works. We have recently— it’s going out this week— Dr. Megan Morris is at NYU, and she is the founder of Disability Equity Collaborative, which Peggy mentioned. We have been on her advisory boards. She is— DEC is coming out with an implementation implementation guide that’s gonna tell you, you’re a hospital, this is how you do it. So we’re gonna have— they’re gonna be doing a webinar. We will get that out there. And this is something that we’re gonna urge hospitals to pay attention to. What else? We have technology people that we’re talking to, to try to get better tech, you know, again, EHRs, captionings, things like that. Hearing health professionals. Would be wonderful if they would sit down with their patients. I mean, you know, we all know healthcare is so important. If they have an upcoming appointment or surgery, work it through with them. Where do you think you’re going to hit the snags? What can you do at that point to solve the problem of that snag? And then help them to fill out a CAP and put it in the system. I know we keep harping, but it’s just a very concrete simple way to give a signal that we’re here. We’re going to put your website up. Sorry, Shari we’ll put the website up on this webinar so people will be able to see it. Okay, they can sign up. They can sign up for our— okay, perfect. That’s fabulous. Well, and I think it’s just really important because there probably are a lot of hearing care professionals that are watching this, right, at this conference and on this podcast. And is there just, you know, what’s one or two things that they what they can do that can really be impactful behind this initiative? And I know they have so many things that are going on at every appointment, right? There’s— we ask so much of them and they have so much to give. But if there was just one or two takeaways for them, what would those be? I’ve got one. So there is the needs assessment, which should be part of hearing healthcare anyway. And I think that a default item on a needs assessment should have to do with healthcare. So finding out from the patient where the struggles are, working with the patient and filling out the CAP and submitting it. It’s hard for folks who have never done this stuff. And so having an ally to sort of partner and even show a person how to do it or what to do can make all the difference. It’s how you build self-efficacy. In patients. And I think that audiologists are familiar with the needs assessment. It’s usually a regular part of hearing healthcare, so it would just be a really great item to always include. Another thing, if I can add, is also when audiologists are housed in their offices or actually in a hospital, That’s a perfect situation. Not only working with their patients, as Peggy just said, but advocating within the system. You know, our patients need to find out what aids and services we have. We need a system. The providers need a system to make sure that their patients get the aids and services. And if something isn’t working, what do they do? Providers don’t know either. You know, they’re given a workaround for telehealth. I’ve had that happen with a surgeon. We were doing an appointment and he couldn’t get the captions to work and he was so frustrated and he said, “I’m doing exactly what they told me to do and it’s not happening.” So we had to end it. We had to end the meeting. That costs money too. Okay, that’s people’s time. So audiologists that are right in the system can be really effective advocates. To get some things done. And, you know, people are working, little things are happening in all these hospitals. But I think, you know, sooner or later, you know, those things are going to kind of join together and we’re going to have more of an impact. Again, it’s awareness for all stakeholders at every level. So, I mean, this is a great opportunity today to talk to a lot of people. So I hope we can generate some interest. Well, thank you both so much for being here and sharing all these insights. It’s a very important topic, and we really are just maybe at the start of this movement. And so thank you for taking the lead on that, and I encourage everyone to learn more at healthcarewithhearingloss.com. So thanks so much. Thanks so much for having us. Well, we love you dearly, but we also respect you highly and are just so proud of the work that you’re doing. So again, we’ll have the important information here on this that people can read, the different, like the website, and they are going to go to that website and help us create better communication for people with hearing loss in every aspect of their lives. So thank you so much. Thank you. You’re welcome. Thank you.