A Conversation with Donna Sorkin!

Join me for an interview with Donna Sorkin, the executive director  of the American Cochlear Implant Alliance, a national organization devoted to expanding access to cochlear implantation for all who may benefit. She has had a long career in advocacy for people with hearing loss at for-profit and non-profit entities.  She has had a cochlear implant for over 30 years and brings her personal experience and enthusiasm to her work in the field.

She was previously executive director of two organizations: the Hearing Loss Association of America (an organization for adults) and the Alexander Graham Bell Association for the Deaf and Hard of Hearing (with a focus on children). Ms. Sorkin served for 11 years as Vice President, Consumer Affairs at Cochlear Americas. She led public policy initiatives and other activities aimed at the broad life needs of cochlear implant users, including insurance coverage and habilitation for children and adults, and educational needs of children with cochlear implants. She has served on federal, corporate and university boards including the U.S. Access Board (as a Presidential appointee) and the National Institute on Deafness (National Institutes of Health) Advisory Board. She holds a Master in Public Policy from the Kennedy School of Government, Harvard University.  

For More Information:  https://www.acialliance.org/

For more information about Dr. Carrie Spangler- check out her Linktree at https://linktr.ee/carrie.spangler.

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

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?
Donna: [01:08:31] No. I think you really hit on everything, Carrie. You let us down a great path. And it's it was really fun to be on this with you. You're you're a great podcast queen. And and I'm I'm really glad I got to be part of it with you.
Carrie: [01:08:50] Well, I want to say thank you for being willing to be a guest on the empowEAR Audiology podcast and sharing your personal journey, your family journey, your professional journey, and all of the advocacy that you have done along the way. I mean, I know has helped me as an individual with a cochlear implant and with hearing loss and accessibility out there in the community. In the real world. A lot of it has to do with your passion and work that you have done on many different levels in your personal and professional career. So thank you for all of that that you have done to contribute to the field as well. And I also want to thank all of our listeners who are with us today and the EmpowEAR Audiology podcast. I encourage you to share this with others if you've enjoyed it and would appreciate if you have a moment to give a five star review because this actually helps others find the EmpowEAR Audiology podcast. So again, Donna, thank you for being a guest today.
Donna: [01:09:56] Thank you. It was great.
Announcer: [01:09:58] This has been a production of the 3C Digital Media Network.