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Cochlear Implant Services for Spanish Speaking Patients: language access and organizational health literacy of programs in the United States of America 5/22/2025 Authors: Alejandra Ullauri, Tessa Kramer, Valeriy Shafiro All Ears: Discover the Benefits of Cochlear Implants 7/26/2024 ACI Alliance Executive Director Donna Sorkin interviewed for “All Ears: Discover the Benefits of Cochlear Implants” The July/August issue of CMA Today included the piece “All Ears: Discover the Benefits of Cochlear Implants” by Brian Justice. CMA Today is a publication of the American Association of Medical Assistants, and ACI Alliance is appreciative of the opportunity to raise awareness about the benefits of cochlear implants within the broader healthcare community. (Permission to reproduce this article granted by the American Association of Medical Assistants.)
Captioning: Universal Design for Language Access 5/30/2024
By Lindsay Zombek, MS, CCC-SLP, LSLS Cert. AVT, and Donna L. Sorkin, MA During COVID, many people relied upon virtual meet-ups like Zoom, Teams, and Google Meet for business meetings, family interactions, and even social events like book clubs and “parties.” After some initial trials, almost all of the virtual options implemented captioning to facilitate participation for those who are deaf or hard of hearing (and everyone else). Many people realized how helpful captioning was and began using it more in other settings. With the general public now more aware of how captioning benefits everyone, we’re seeing more opportunities for people with hearing loss. Click this resource to read tips on using captions. Listening in Restaurants 1/26/2024
By Lindsay Zombek, MS, CCC-SLP, LSLS Cert. AVT, and Donna L. Sorkin, MA One of the most common concerns reported by adults who are deaf or hard of hearing is communication in noisy environments, with restaurants frequently topping people’s lists of places where they struggle. Restaurants are often loud, with background noise such as dishes clattering, food preparation from the kitchen, the hustle of people being seated and leaving, and often mood music. Click this resource to read tips on overcoming loud restaurant noise levels. Hearing Loss: What You Need To Know About Cochlear Implants 10/23/2023 Jeffrey Snyder of the Broadcast Retirement Network recently interviewed ACI Alliance Executive Director Donna Sorkin on “What You Need To Know About Cochlear Implants.” Watch here. Dialogues to RISE 10/3/2023
American Academy of Pediatrics Publishes a Clinical Report on Hearing Assessment in Infants, Children, and Adolescents and ACI Alliance Responds
9/13/2023 The September 2023 AAP report directs needed attention to the critical importance of hearing healthcare in children including assessment protocols and mention of CMV as a leading cause of childhood hearing loss. Unfortunately, it provides inaccurate or incomplete information on several important topics. Given that many pediatricians are unfamiliar with the options and opportunities for children who are deaf or hard of hearing and how they can play a key role in supporting a child’s hearing loss journey, we were disappointed with the reports inaccurate and biased information. We submitted Comments to Pediatrics, which have been published by AAP at the conclusion of the Clinical Report document. We encourage our members to join this important conversation. Read the Pediatrics Clinical Report here. Save a Copy of the ACI Alliance Comment here: comments about the Clinical Report on Hearing Assessment that ACI Alliance submitted Increasing Cochlear Implant Awareness in Hearing and Primary Health Care 9/7/2023 The Hearing Journal p 6,7, September 2023 by Sorkin, Donna L. MA; Odato, Laura MPP Supporting hearing health professionals to know when to refer a patient for a cochlear implant evaluation is a high priority for ACI Alliance. To advance that objective across the care continuum, the organization has enlarged its efforts to grow CI awareness among health care professionals outside of hearing health as well as those within the hearing health community who do not provide CI services. Read more here. LISTENING è LANGUAGE è LITERACY FOR ALL DEAF AND HARD OF HEARING CHILDREN: A COLLABORATIVE INITIATIVE 7/7/2023 A task force of individuals who support families of children who are deaf and hard of hearing recently completed a 5-month collaborative process to develop research-based messages on the benefits of listening for language development and literacy. The group included parents of adult children born deaf or hard of hearing, adults who grew up with hearing loss, and professionals in the field of childhood hearing loss (including educators, audiologists, speech pathologists, a surgeon, psychologists, and early intervention experts). The collaborative effort relied upon earlier work by others including Dr. Dana Suskind’s Thirty Million Words: Building a Child’s Brain and guidance from pediatric nurses on “Language Nutrition,” a concept emphasizing the role of families in providing home language that is rich in quality and quantity. The Language Nutrition concept applies to language learning for all children but is even more critical for deaf and hard of hearing children. The task force exploration led them to public and private school educators in Georgia who have initiated an effort to encourage parents to use the language of the home to talk, interact, read, and engage with their children. The Listening è Language è Literacy initiative resulted in the development of an infographic designed to be widely used in supporting families of children who are deaf and hard of hearing and the professionals who serve them.
*Click here to download this infographic as a PDF *Click here for the Spanish Version of this Infographic. The translation of Listening—Language—Literacy into Spanish was completed by Alejandra Ullauri AuD, MPH (Audiology En Español) and Mariana Mejía Turnbull AuD (NYU Langone Health). We are grateful to the individuals who participated in the collaboration • Sherilyn M. Adler PhD, Psychologist, Adult son, Co-Administrator for Parents of Children with CIs Facebook
• Lori Bobsin PhD, SLP, LSLS Cert. AVT, University of Virginia CI Team
• Teresa Caraway PhD, SLP, LSLS Cert. AVT, Hearing First
• Barbara Mellert
MPH, 2 adult sons, Co-Administrator of Parents of Children with CIs Facebook Group
• Marquitta Merkison
AuD, Audiologist, ASHA
• Judy Sexton MS, CED, LSLS Cert. AVEd
, Clarke Schools for Hearing and Speech
• Uma Soman PhD, Educator, LSLS Cert. AVEd
, Listening Together and Fontbonne University
• Donna Smiley PhD, Audiologist, ASHA
• Donna Sorkin MA, American Cochlear Implant Alliance, Deaf Adult (Task Force Co-Chair)
• Carrie Spangler AuD
, Educational Audiologist, Summit Educational Service Center, Deaf Adult (Task Force Co-Chair)
• Andrea Warner-Czyz
PhD, Audiologist, University Texas Dallas
• Nichole Westin, MA, American Cochlear Implant Alliance
• Karl White PhD, National Center for Hearing Assessment & Management, Utah State
• Nancy Young MD, Northwestern School of Medicine and Lurie Children’s Hospital of Chicago
Dr. Teddy McRackan and MUSC TeamGive Young Ukraine War Refugee The Gift Of Sound 5/10/2023 South Carolina doctors have given a young Ukraine war refugee the gift of sound. A family that fled Ukraine last year came to the United States in desperate need of answers. They feared that their young daughter, 2-year-old Zlata Kuzmina, was completely deaf. Dr. Teddy McRackan, a surgeon and cochlear implant specialist and his team at the Medical University of South Carolina confirmed the girl was deaf in her left ear, but they saw a glimmer of hope. "We saw that she was responding at very, very loud levels to noise in that right ear," McRacken said. Read the full story here.
The Early Hearing Detection and Intervention Act of 2022 was passed 12/20/2022 The Early Hearing Detection and Intervention Act of 2022 was passed and signed into law by President Biden on December 20, 2022. It included a requirement for a study by the US Government Accountability Office (GAO) on how information is collected and provided on state EHDI websites and other formats, and ways to address historically underserved communities. ACI Alliance conducted a review of the 50 state EHDI websites and only 26% were found to provide comprehensive information, which was used to urge for the inclusion of the GAO study in the bill. In addition, we are pleased that language we worked on remained in the recently introduced Omnibus FY 2023 Labor Health and Human Services (LHHS) explanatory statement. We will continue to monitor this critical bill as it moves through Congress.
The agreement recognizes the requirement under the PHS Act for EHDI funds to support prompt evaluation and diagnosis of children referred from screening programs and appropriate educational, audiological, medical, and communication ( or language acquisition) interventions (including family support), for children identified as deaf or hard-of-hearing. The agreement encourages HRSA to provide the most accurate, comprehensive, up-to-date, and evidence-based information to children identified as deaf or hard-of-hearing and their families. The agreement also encourages HRSA to work with partners to advance awareness about the wide range of modalities available for children who are deaf and hard of hearing, including but not limited to auditory-oral therapy, auditory-verbal therapy, Signed Exact English (SEE), American Sign Language (ASL), Total Communication (TC), and Cued Speech; as well as a full range of assistive hearing technologies, such as hearing aids and cochlear implants. An Assessment of 50 State Early Hearing Detection and Intervention Websites 11/28/2022 Article published in The Journal of Early Hearing Detection and Intervention (JEHDI) by Nichole Westin, MA and Donna Sorkin, MA A study of the 51 state (and DC) early hearing detection and intervention websites conducted in 2021 by ACI Alliance staff conducted a review of the EHDI websites to see if the information provided to parents is accurate and unbiased. The results were recently published in the Journal for Early Hearing Detection and Intervention. You can read the study by clicking here. Cochlear Implant Basics 11/1/2022 ACI Alliance Executive Director Donna Sorkin spoke with the Cochlear Implant Basics podcast about the changes in the criteria for adults covered by Medicare. Listen to the podcast here.
Cochlear Implants: Confirming Reality, Dispelling Myths 9/27/2022 ACI Alliance Executive Director Donna Sorkin presented “Cochlear Implants: Confirming Reality, Dispelling Myths” during the September 2022 Topic Tuesday on cochlear implants for children. She covered how to start the implant process, how often CIs fail, who are candidates for CIs, what does a CI sound like, and she shared her own personal experience as a CI user. SC Hands & Voices and Beginnings SC partner together to host Topic Tuesday, a webinar every third Tuesday of the month for parents of deaf and hard of hearing children and professionals who serve them. Cochlear Implantation: The Most Misunderstood and Under-Recommended Treatment Option in Audiology? 8/26/2022 Article in Audiology Today by Dr. Sarah Sydlowski Cochlear implantation is commonly viewed as a treatment of last resort. Between 1984 and 2015, a total of 170,252 U.S. adult and pediatric patients underwent cochlear implantation, accounting for 240,056 devices (iData Research, 2016; Nassiri et al, 2022). These patients represent only a fraction of the more than eight million annual hearing aid users in the United States (iData Research, 2016; Nassiri et al, 2021). Read article here. Cochlear Implants and the Continuum of Care: Interview with Donna Sorkin
6/6/2022 In this episode of This Week in Hearing, Donna Sorkin sits down with Brian Taylor for an interview that touches on the ACI Alliance’s mission, the broadening cochlear implant (CI) candidacy requirements for children and adults and how CIs are an integral part of the continuum of care. Listen to the full interview here. Collaborations with Other Organizations
3/29/2022 ACI Alliance members actively participate in other organization’s meetings to expand awareness about recent research and best practice in cochlear implants. Recently ACI Alliance members gave presentations at several notable conferences around the country to increase awareness. Little Ears Field Day in Gainesville, FL
3/19/2022 On March 19th, ACI Alliance was grateful for the opportunity to participate in Little Ears Field Day in Gainesville, FL. Hosted by University of Florida’s Student Academy of Audiology and Heroes for Hearing, Little Ears Field Day was a day of fun, games, and learning for children with hearing loss and parents. ACI Alliance board member Melissa Hall AuD and Valerie James Abbott, author and advocate for Late Onset Hearing Loss Awareness Week, spoke to attendees and shared resources ACI Alliance supplied on cochlear implants.
What Does a Cochlear Implant Sound Like? A Journey of Empowerment and Success with Donna Sorkin, M.A.
2/24/2022 Donna Sorkin, executive director of the American Cochlear Implant Alliance, shares her journey to receiving a cochlear implant, including the sounds, experiences, stresses, and successes. She explains how music sounds with her implant, accessible technology, and how she uses the technology to empower her life and leadership role. Listen to the podcast here. Late Onset Hearing Loss Awareness week
1/24/2022
EI Deafo Premiers on Apple TV+ with CI Recipient Lexi Finigan as the Voice of the Lead Character 1/12/2022 El Deafo is a new animated series streaming on Apple TV+ about a young girl who loses her hearing and learns to embrace how that makes her special. El Deafo is based the 2014 best-selling graphic novel authored by Cece Bell about her own childhood hearing loss caused by meningitis. In the animated series, the main character is voiced by 12-year-old Lexi Finigan, a 7th grader from South Florida who loves math, golf, cooking and listening to Taylor Swift through the Bluetooth on her cochlear implants. Lexi graciously answered ACI Alliance’s questions about her experience with the show and her experience as a cochlear implant recipient voicing Cece.
Click here to read the interview. RALLY CAPS: THE MOVIE
12/1/2021 ACI Alliance is proud to support the upcoming film, Rally Caps. The film is based on the book written by Jodi Michelle Cutler and Stephen J. Cutler, inspired by Jodi’s experience as a mother to a son with profound bilateral sensorineural hearing loss and a cochlear implant. ACI Alliance was pleased to provide informational support for the public on cochlear implants, which is posted on the film’s website. The film premiered at the Heartland International Film Festival (HIFFF) in October 2022. Click here to read more. HEARING HEALTH TODAY PODCAST10/26/2021 The newest episode of the Hearing Health Today podcast features ACI Alliance Executive Director Donna Sorkin discussing her hearing loss journey, ACI Alliance’s work in advocacy and awareness, and how to share the best resources and empower patients of all ages with hearing loss. Listen on Apple Podcasts https://apple.co/3nGKSsr , Spotify https://spoti.fi/3pzrosg or Google Podcasts https://bit.ly/3jzuZ5z
THE INCREDIBLE HULK GETS A Cochlear implant8/3/2021 In February 2021 actor and bodybuilder Lou Ferrigno, popularly known as The Incredible Hulk, received a cochlear implant. In this video with ACI Alliance Executive Director Donna Sorkin, he discusses his lifelong hearing loss and why he went forward with a cochlear implant at age 69.
ACI Alliance Partners with International Hearing Society (IHS)6/3/2021 We are excited to announce our partnership with the International Hearing Society (IHS), a membership association representing hearing healthcare professionals worldwide. IHS members are hearing aid dispensers engaged in the practice of testing hearing and selecting, fitting, and dispensing hearing instruments as well as counseling patients. Read our article in The Hearing Journal: June 2021 - Volume 74 - Issue 6 - p6. Is Your Hearing Aid Patient a CI Candidate? Authored by Holcomb, Meredith AuD; Odato, Laura MPP NEW Feature Length film on deafness: Sound of metal12/9/2020 A new film, Sound of Metal, premiered in early December. Initially we thought to ignore it as another film denigrating cochlear implants and promoting the perspective that deafness doesn’t need to be fixed. But the critical reviews of the film, noting superb acting and remarkable audio effects were convincing. Click here to read more. Every second counts for babies who need help to hear4/18/2018 Our executive director Donna Sorkin had the opportunity to speak with Esther Cepeda (Washington Post Writers Group and Syndicated Columnist)about the importance of cochlear implants. Cepeda chronicled her conversation Chron. Cochlear implants are remarkable technological devices that can help deaf people hear again. Donna addressed the challenges of educating and helping the public and even health care professionals understand the treatment. She noted that the information families receive after their child is identified with hearing loss often omits a comprehensive discussion of options so that families can make informed choices for their children with hearing loss. You can read the full article here. ACI Alliance Op-Ed on Options for Deaf ChildrenAmerican Cochlear Implant Alliance is delighted to announce that the Houston Chronicle published an important op-ed on April 13, 2018 on the options available to deaf children:
https://www.houstonchronicle. Sirius XM Cochlear Implant SpecialDoctor Radio joined ACI Alliance at CI 2018 DC to record a special presentation of the Otolaryngology Show. The Cochlear Implant Special can be heard on Sirius XM 110 Radio. The show covers a range topics including the cochlear implant process, the surgery and aftercare, how a CI works, and health insurance coverage. Show participants included one of the producers and several of the stars of the the newly released documentary The Listening Project. To listen, visit https://player.siriusxm.com/#/player/on-demand and search “ACI Alliance.” If you aren’t a Sirius subscriber, you can create a 30-day trial membership. This is a useful resource for parents and families.
The Listening ProjectThe Listening Project - a new documentary by Irene Taylor Brodsky and Jane R. Madell, premiered on Friday, March 9 at the CI2018 DC Emerging Issues Symposium in Washington, DC. The film explores the changing face of deafness and the opportunity offered by advanced hearing technology, cochlear implants and hearing aids, through the experience of fourteen deaf people. Click HERE to learn more about the film and it's availability.
ACI Alliance and Hearing Loss Association of America (HLAA) Partnered to Improve Cochlear Implant AwarenessTogether, ACI Alliance and HLAA are reached out to adults and others to improve information flow from trusted sources and increased the likelihood that adult candidates will pursue cochlear implant intervention. Although cochlear implants have been shown to provide life-changing benefits and high rates of cost effectiveness, utilization rates in the United States are still stuck at 5% of adults who could benefit. This percentage is unchanged from the past 10 years. We worked to expand awareness about cochlear implant candidacy and outcomes for adults. This collaboration featured three awareness initiatives:
For further information on these awareness initiatives click HERE. Educational Seminars on CI AdvancesCochlear implant candidacy and outcomes have advanced reflecting technology improvements and better linkage between the surgical intervention and follow-up care. Children and adults with a wider range of hearing loss and other medical issues are now benefiting importantly from traditional cochlear implants as well as hybrid and auditory brainstem implants. Medicare age individuals who have been told they have a bit too much hearing to qualify for Medicare coverage for a CI may be candidates for a clinical study. HLAA Chapter and ACI Alliance are collaborating to help possible candidates, family members and professionals learn more about advances in technology, candidacy and outcomes. Click here for presentation materials. "I Can Hear You Whisper: An Intimate Journey through the Science of Sound and Language.”“My toddler was not learning to talk the way his brothers did… Was something wrong? My search for answers in the science of sound, language, and astounding medical breakthroughs is a journey into the mysteries of the human brain.” Lydia Denworth 
Click Here to view an interview on CBS Teen Gains Cochlear Implant Through ACA Marketplace PlansThe ACA Marketplace plans typically cover cochlear implantation. One teen in Chicago purchased her own ACA plan when her parents' employer insurance refused to cover her cochlear implant surgery. Click here for online article. 95 DECIBELSThe film 95 Decibels is based on the true story of a family’s experience when their daughter was diagnosed as profoundly deaf at 18 months of age. It explores their fears and the obstacles they faced as well as the support they received from hearing care professionals and parents of other deaf children. The 27-minute drama was written and directed by Lisa Reznik, the mother of 17 year-old student with a cochlear implant was launched at the CI2013 Symposium in Washington DC on October 24, 2013. Media CoverageCochlear Implant Developers; Graeme Clark (Australia), Ingeborg Hochmair (Austria) and Blake Wilson (US), receive prestigious Lasker Awards (“American Nobel’s”) for medical research and contributions to public health.
Awareness activities at CI2013ACI Alliance used the opportunity of having Major General Robert Hedelund, USMC as a speaker during the Opening Ceremonies to address traumatic injuries, deafness and cochlear implants in the military. General Hedelund was previously director of Marine
and Family Programs and hence is familiar with hearing loss, acknowledging that it is the number one disability for men and women who have served in active duty. Although post-traumatic stress disorder has received more attention, in fact the VA numbers
indicate that auditory injuries are growing rapidly with incidence of 29 of 1,000 soldiers reporting hearing loss. Those numbers will grow in the decades ahead. Hedelund commented that “I don’t think any young man or woman joining the Marine Corps
thinks that in 4 years or in 40 years, you will come away from your experience serving your country deaf.”
ACI Alliance encourages accurate discussion of cochlear implantation and its benefit for appropriate children and adults in widespread media outlets. At its CI2013 Symposium, the Alliance sought media coverage of the opening ceremony as well as other conference content to expand general awareness about deafness and cochlear implants. We were pleased to have stimulated three excellent mainstream media articles—two on deafness and cochlear implants among military personnel and a third documenting the benefits of cochlear implants for older adults. NY Times, A Different Kind of Hearing Aid. http://newoldage.blogs.nytimes.com/2013/11/11/a-different-kind-of-hearin... Bloomberg, Thank our Veterans by Helping Them Hear. http://www.bloomberg.com/news/2013-11-14/thank-our-veterans-by-helping-t... |
