Volume 36 Issue #3 Summer
Association of Late Deafened Adults
Summer 2020 Newsletter
Volume 37 Issue 2
In His Own Words…
These are interesting times for those of us who have hearing challenges. It seems like every day, we have a challenge. But we also have an opportunity….to learn, to implement change, to inform.
With COVID, masks have become our friend, but also our nemesis. This is because it is difficult for those of us with hearing loss to read speech and to obtain clues to what is being communicated to us. ALDA, along with other hearing organizations, have been busy alerting governmental agencies, providers, and businesses about our communication concerns. Solutions range from the person maintaining a 6 foot distance and talking to us without the mask, using clear masks that will allow us to see the person’s lips, or using such automatic speech recognition apps such as Live Transcribe and Otter.
We’ve found that some people embrace the concept of clear masks and some do not. Some have no issue removing their masks and some do. Some of us have issues with people removing their masks and some do not. Some use Automatic Speech Recognition (ASR) and some do not. Elsewhere in this newsletter, Laura Sinclair will report on a test we did with a clear mask. And John Waldo is hoping that there will be a study which determines the efficacy of face shields. Bottom line, what we’ve learned so far is something we’ve known all along at ALDA—“Whatever Works!”
ALDA is engaged in advocating for our best interests, whether it is in the courtroom, before a federal agency or in social media. We’ve taken a stand before the FCC against watering down the standards of accuracy that the ASR companies must show before they are allowed to sell their services on the air waves. We’ve urged caution with regard to over-the-counter hearing aids being paid for by Medicare because there are a lot of hucksters out there who will sell people a bill of goods for something that will not really help their hearing health in a significant way. We will continue the fight for open captioned films in theaters that show classics or recorded performances in addition to first run films as soon as movie theaters are up and running again.
The COVID pandemic will end, and ALDA was there before it started, remains very active now, and will be active in the future. We are doing our best to increase the size of our committees so that more people become involved with our all-volunteer organization. We are proud to have a variety of Committees. The more volunteers we have serving in various capacities, the better we will be able to provide assistance and support to our members and the public at large. Everyone has a special talent – and we welcome you joining our team. Simply get in touch with us using the contact page on our website at alda.org/contact/.
Take care and be safe!
ALDA 2020 Board of Directors
Thank you for your support!
Contact us to get involved or share ideas: alda.org
President: Rick Brown
Vice President: Cynthia Moynihan
Past President: Sharaine Rawlinson Roberts
Secretary: Tina Childress
Treasurer: Matt Ferrara
Region 1: Laura Sinclair
Region 2: Diane McDonagh
Region 3: Debbe Hagner
Region 4: Michelle Yook
John Waldo, Esq
As all of us know, hearing aids are frequently necessary and not always covered by insurance. That could be about to change dramatically.
A stunning decision on July 14, 2020 from the Ninth Circuit Court of Appeals interprets the non-discrimination provisions of the Affordable Care Act (aka Obamacare) as potentially barring commercial insurance policies from excluding coverage for hearing aids and associated medical visits.
The case was brought in federal court in Seattle in 2017 by two individuals who were insured by Kaiser health plans. Those plans exclude any coverage for hearing aids including bone-anchored aids, and for any examinations, leaving the insured individuals to pay 100% of the cost. While the plans do cover cochlear implants, the complaint stated excluding any coverage for hearing aids discriminates against people with disabilities, and such discrimination violates the ACA.
The trial court dismissed the case stating that ACA requires insurance policies to cover “essential health benefits,” defined by Congress. The court said those enumerated benefits must be offered in a non-discriminatory manner, meaning, for example, that if a plan covers a particular type of surgery for adults, it cannot deny coverage to someone on the basis of a developmental disability. But the court said the ACA does not require insurers to offer benefits not defined as “essential,” and because hearing aids are not defined as essential, Kaiser is not obligated to pay for them.
The court agreed the ACA prohibits benefit designs that intentionally discriminate against people with disabilities. But it said the hearing aid exclusion is a neutral policy that applies both to people with and without disabilities. As the court put it, “the exclusion of most treatments and services related to hearing loss and hearing care precludes coverage for a broad array on conditions, only some of which rise to the level of a disability under governing law.”
The Court of Appeals reversed that decision. It said the enumerated “essential health benefits” are minimums only, and insurers must still design policies that do not discriminate on the basis of disability.
The Court of Appeals did not say coverage is required but sent the case back to the trial court to explore the question of whether excluding hearing-aid coverage predominately impacts people with disabilities or whether it sweeps up people “whose hearing is merely impaired.” The claimants might be able to make such a showing, the appeals court said, but would need to include in its amended complaint “facts showing how the needs of hearing disabled persons differ from the needs of persons whose hearing is merely impaired.” Conversely, the court said the exclusion might pass muster if cochlear implants, which are covered, “serve the needs of most individuals with a hearing disability.”
That directive is something that should be quite doable. We all know not as many people have hearing loss of such a degree that they need for cochlear implants. Not all individuals with hearing loss may benefit from a cochlear implant.
We know also that hearing aids are not particularly fashionable, are not very comfortable, and that a lot of people feel stigmatized as “old” when they wear them. The reality, as we (and our partners and families) know, is that you don’t get hearing aids until and unless your hearing loss is materially affecting your day-to-day life.
The case is not back in the trial court yet. Kaiser can ask for reconsideration at the appellate-court level, and if denied, they can theoretically petition the U.S. Supreme Court for relief. Neither approach has a high probability of success. Because of the unprecedented nature of this decision, reconsideration by the appellate court is a greater possibility than in cases with a fairly well-developed body of law.
The ALDA Social Media Committee
Hello to our ALDA family and those we have yet to meet from your Social Media Committee! 2020 has obviously been a trying time for all of us and the Social Media Committee has been focused on helping people stay connected. We hope you have enjoyed the linked articles about various apps and systems that allow for captioned communication from a distance. If you missed them or would like to share with others, they are provided here again. As a reminder we are always available to answer questions and would love to read any suggestions you might have. Simply go to the Contact page and drop us a line. We are especially interested in information for the ALDA Resources page. The Social Media Committee is working hard to make it easier for our members and the general population to have access to important information through the ALDA website, social media and email. Feel free to share any and/or all of it with your family and friends. We look forward to hearing from you. Keep in touch and thank you for your continued guidance and support.
In News by ALDA News- July 10, 2020
Rebecca Knill is a writer with cochlear implants. See her link below where she shares her funny, insightful talk, the evolution of assistive listening technology, the outdated way people still respond to late-deafened and … Read More
In News by ALDA News – April 13, 2020
ALDA, Inc. remains thankful to everyone for keeping their distance during this pandemic. We all need to remain connected and technology is making this possible with videoconferencing platforms to see and hear people online and speech-to-text apps when lipreading is not possible. With the latest technology, this allows not only hearing people, but the Late-Deafened, Deaf and Hard-of-Hearing People to connect with everything from attending webinars or online classes and worship services to celebrating birthday parties, marriage and more … Read More
In News by ALDA News – April 29, 2020
Phone and Cell Phone Captioning Tools for the Late-Deafened, Deaf, Hard-of-Hearing and our Hearing Allies ALDA ROCKS! Thanks to captioned phone calls and/or mobile apps, the days when people with hearing loss are unable to stay connected is a thing of the past. Today, not only hearing people, but the Late-Deafened, Deaf, and Hard-of-Hearing individuals can communicate effectively using captioned telephones and cell phone apps… Read More
LATE-DEAFENED HEARING LOSS RESOURCES AT YOUR FINGERTIPS
Want to learn more? Simply visit the ALDA website and click on the Resources link as pictured below or click here:
YOUR input matters – Visit the Contact link and so share your thoughts or other content you would like to share to help those we serve.
Working From Home
By: Ken Arcia
During the pandemic, most of us are working from home or staying at home as much as possible. I miss interacting with others and socializing, and I miss my friends too.
Because I work for Sprint Accessibility, now under T-Mobile, I usually get to travel quite a bit for my job. That all stopped in March when most other companies also halted travel.
I have worked from home for the last 5 years so the “work from home” change was not a big change for me. However, the stop in travel had a big impact. I loved to travel for my job and would often take a few days off before or after travel as a mini-vacation. I didn’t realize how much I enjoyed it until it was halted.
As part of my job, we have frequent video conference meetings, typically through Zoom. Now with the COVID-19 pandemic, we have more…sometimes several Zoom meetings each day! It’s a Zoomarathon!
Most of my co-workers are deaf, so we use ASL. If a non-signing person joins the call, we arrange for ASL Interpreters to be part of the call too to. Sprint also has a service called Relay Conference Caption (RCC) or Sprint Teleconference Captioning (STC), and this is usually a separate screen with captions. As a result, all of our meetings are fully accessible. Many of the states with Sprint Relay Service also offer RCC as part of their state contract.
However, I realize that we are the exception, not the rule. Most people who use video-conference apps like Zoom, WebEx, Google Meet, Microsoft Teams, Adobe Connect, etc. may not have the same full access.
There have been some discussions about “how do I get captions for my Zoom meeting?” or “Which app is the best?”.
I can’t tell you which is the best as it’s often a matter of preference. However, ALDA has the new Social Media Committee which has provided information on the ALDA website and in recent e-blasts/social media postings with resources for video conferencing.
Have fun reviewing the website and playing with the apps. It’s SOOOO important to stay connected while staying at home.
Hugs till next time,
Nurse On Call
Ann Marie Killilea,
MSN, RN, EdDc
Ask the Nurse — Hearing With Our Eyes: The Importance of Taking Care of Our Eyes
By Anne Marie Killilea, MSN, RN, EdDc
When one of the five senses are lost, the other senses step up and take over to help. It is amazing what each one of us can do with hearing loss and how we automatically use our eyes to help hear. Whether we realize it or not, we use our eyes to help hear in many situations. For example, consider the impact that wearing masks during the Covid-19 pandemic has caused for all of us. Full lower face coverage from a mask has created many problems for those of us with hearing loss. We cannot see a person smile or frown or tell how a word is formed. And the masks can cause speech to be mumbled! Wearing masks has caused problems for those who thought they heard perfectly and are now having difficulty communicating. People are searching everywhere for face masks with clear cutouts around the mouth to improve communication.
We use our eyes to supplement what we cannot hear. We read lips, use our eyes as special markers so we do not bump into things, and eye expression adds dimension to our conversations with others. Our eyes become one of the best supplemental senses to “hear” with and need the same amount of care that we give to our ears.
Recently, I was diagnosed with “Dry Eye”. I took this diagnosis very lightly as I had never heard it was a real eye problem. I knew that dry eyes could be a sign of Sjogren’s syndrome, an autoimmune disease, but that was all. Halfheartedly, I bought some over the counter eye drops. The drops worked well for a few days, but soon I felt I was not getting the same results, so I increased the amount of times per day to apply the drops. After a few weeks, the drops were no longer working like they originally did. I became aware of the scratchy pain in my eyes when I drove my car and after I read my emails. I also became very tired and my eyes became red after reading and watching TV. These observations were new and disturbing to me. In addition to all these eye problems, I noticed I had more trouble hearing others during the day.
I made an appointment to see my optometrist. He is kind and patient and truly uses his ears (and heart) to hear what his patients say to him. As he sat listening to my complaints, he folded his arms and placed one hand under his chin and said to me, “From the symptoms you are describing and the condition of your eyes that I see, you have dry eyes. We can take care of that here.”
I scoffed at that diagnosis. Really? Is that all I have? Ok, do I have Sjogren’s syndrome? Please explain to me exactly what is “dry eye” and do I really need to treat this? Again, he smiled and drew up eye care material on his computer. He taught me what dry eye is and left untreated the list of lifelong problems I would eventually develop. Crusty scarring on the surface of my eyes would permanently affect my vision. Developing inflammation of both eyes would alter the way I closed my eyes. And, there were future complications added to the list. While I usually am not one to quiver in my shoes when someone describes a medical problem with me, this diagnosis hit me extremely hard. Despite being a nurse, I did not know enough about eyes and eye care. After all, I thought to myself, I was a late-deafened adult, hearing was more important to me. But, my doctor persisted in delivering his knowledge to make me understand the severity of my eye disease. At the end of the discussion, he shared if the problem with my eyes was not taken care of it would affect my ability to hear. Not because eyes are ears are connected, but that our eyes are used to supplement our hearing. Now, I fully understood why I had problems with my hearing!
There are several different types of dry eye problems. My dry eye problems were the type that needed to have “plugs”. I was making tears, but they were not enough. And, I needed to use small round warmed pads to place over my closed eyes for 10 minutes each evening. Applying the warmed pads to both eyes would stimulate oil gland secretion in both upper and lower eyelids. “Ok”, I said to myself, “here we go!” I took in a deep breath and sighed, “The care that I must do now is not a just a good thing to do, but an important one to do to keep my eyes healthy.”
The procedure to put the “plugs” in was painless and I felt nothing different once it was complete. Within an hour after the procedure, I went to a lumber store to purchase some wood medallions for an under the countertop project I had to do. I usually squint and leave with both of my eyes burning after being in the store for 15 minutes. So, I began to pace myself. 15 minutes were up…. No pain, no squinting. 16 minutes were up… I was still feeling and seeing great. 20 minutes were up, I could see clearly. “Wow!”, I said to myself, “Was I wrong about this condition!”.
I used the warmed packs on both eyes, used the prescribed eye drops and went to sleep. The following morning, the redness was gone and scratchiness had disappeared. It felt great to be able to read and do the things I loved to do without getting “eye” tired.
It has been some time since I had this procedure. I still use the warm packs on both eyes every night. My eyes have returned to what they looked like before. The quality of my life has improved. I feel indebted to my optometrist for urging me to get this done. He knew how much I counted on hearing with my eyes!
Annual eye exams should be a part of your routine. Your physician, Nurse Practitioner (NP) or Physician’s Assistant (PA) will note if the surface of your eyes is changing. If you have problems with reading or driving do not put off getting medical care. Depending upon your insurance coverage, and your type of eye problem, various types of medications and/or therapies may be prescribed. Try them out. Note if the medication and/or therapies worked, keep a log of how long it worked, and if and/or when, it stopped working. Contact your healthcare worker to share if the prescribed treatment is working. If it did not work well, go back to your physician, NP or PA and share what did not work. Describe what you did and how the symptoms did not get better. What were your symptoms like, what happened to make your eyes worse? Work with your physician, NP, or PA to get the eye care you need! Be persistent in getting the help you need, and do not give up! Your eyes are so important to help you hear. Do not neglect them.
I strongly urge you to have your eyes checked every year, and more often if you are having problems. Subtle changes in vision, the eye itself, or the eye socket can be picked up early. Early treatment will help you avoid long lasting damage to your eyes, changes in your lifestyle, and loss of hearing! Learn from my mistake! I thought the redness, problems with reading and driving were all signs of getting older. I even had my cochlear implants mapped again because I thought my hearing was declining and I was not communicating well enough. I would have been in trouble if I had continued to be careless with my eyes!
In addition, during these trying times in our lives living with the uncertainty of the COVID-19 pandemic, stay safe and healthy. Take good care of yourself. You are especially important to yourself and to others!
THE ALDA BOARD AT WORK:
FREE TRIAL OF A CLEAR MOUTH PANEL MASK…
can you LIPREAD my SMILE!?
by Laura Sinclair RD1
I am the home-spun type that wants to tackle hurdles straight on. Early on in this pandemic, I purchased some 3-ply disposable masks from one of our business suppliers. “OK, well, it’s better than nothing,” I thought, “But what about making the clear panel insert. How hard could it be?” Several versions later, I created one I’d be willing to wear. Now how do I get others to wear them for my benefit? The issue of elastic ear loops bothering those with BTE hearing aids and cochlear implants is a problem. Lucky for me, I wear all-in-one processors so I have nothing on my ears but my brother has a regular BTE CI and my mom already has a hard-enough time with dexterity to get her single hearing aid on right. I didn’t want her needing repairs when it went flying across the floor after a grocery store trip. Ties didn’t seem to be the answer either. Velcro??
With time brings clarity. I continued reading how new versions and safety recommendations might solve the availability of adoptable clear masks with the disruption of the supply chain. Cloth masks were being seen in all manner of materials and configurations.
Mid-June I caught wind of a clear panel mouth mask free trial offer through Rafi Nova here in the USA. Launching into my ALDA advocacy outreach, I thought, “Gee, ALDA members are a spot-on group (with late-deafened and hard-of-hearing people!) to get feedback from as we use lipreading, ASL, and often work in the field of hearing loss or have friends and family who see us struggle to remain engaged when communication barriers are present. ” Rafi Nova was swift to reply with my request for masks for a test run. Soon your Board of nine and John Waldo, our consulting attorney, were in possession of a 100 count supply to hand out to family, medical professionals, educators and friends with the promise of wearing them to garner feedback and raise awareness that they exist. There are a wide variety of individuals who would benefit from them, indirectly, if the rest of the world would accommodate us.
Some questions I had immediately were…
1) Is the window vinyl and what mil is it? (having made a few, I was curious if a range would work or if it needed to be specific)
2) Can the window be treated with hand sanitizer or alcohol to no detriment? (let it air out for a bit before wearing!)
3) Would it be possible to add a washable breathing button filter like some masks have to reduce fog? (some folks might need)
4) Would it be possible to make the vinyl window removable/replaceable for both washing/dryer heat and scratches due to wear & tear? (ultimately, it seems this would be ideal since no one wants to throw out a cloth mask that costs $15)
5) Would putting a used mask in a UV box or using a UV wand be advisable for sterilization between soap washings? How long do I treat it for? (I still don’t know this answer but my lifestyle doesn’t necessitate frequent washings so my needs are different than others)
Some of the feedback I received:
I would have to run the mask through my legal and our IP dept. for approval to use in a patient setting. Might consider having 5 to alternate during my work week (CDC guidelines are evolving for masks as well as Face Shields)
Compared to other simple cloth masks, this was MUCH better! More comfortable fit and ties! (not universally agreed but Rafi Nova offers two attachment options)
Anti-fog treatment works! I keep a little bottle of liquid dish detergent handy to re-treat if needed (if handing a new wrapped mask to someone, it isn’t already treated for fog) (condensation occurs in high humidity no matter what the mask is treated with)
I love being able to see my child’s/spouse’s smile when in public! (SO important!)
Seeing facial expressions makes me happy! Plus I understand more even with a bit of muffling (3db – 12 db loss depending upon other mask/shield combinations)
These dry easily overnight after hand-washing.
I like the bigger window this mask has when compared to other disposable masks I’ve seen.
At times it was difficult to take deep breaths in the mask and speaking for long periods of time was slightly fatiguing. The cotton fabric breathes better.
So, a mixed bag, but it’s all good because SO many stopped us to ask about the masks, why we have it, and how they can get their own to wear or hand out. Kudos to the Rafi Nova team for diving into our pond with the life-raft! This was an excellent experience!
This issue is exploding! One can find home-made patterns online or for purchase on Etsy and even for free for the price of shipping in some places! However, one must consider consistency & durability, sanitization, etc.. The Rafi Nova mask comes individually wrapped and they now offer “teacher/student packages”… including child-size masks. The price is on par with any other cloth mouth mask I’ve seen with a variety of colors (calm solids instead of distracting patterns).
My personal goal is to help set best practice standards for providers and others when communicating with deaf or hard of hearing people who rely on lip reading. I will continue advocating for communication access with “whatever works” including other shield/mask models and voice-recognition aids I can get my hands on. As an example, I found that the plug-in mike from my PocketTalker works with my Android cell phone jack adapter to use the Live Transcribe!! I just attach the cell phone to a selfie stick and I can use the feature with others who are D/HOH so they can read what I am saying or I can pick up what they are saying from the social distancing we all are bound to obey. BuzzCards App is useful to quickly explain about the clear panel masks as I have it pre-typed for easy display.
I have gone as far as contacting my U.S. Senator with the need to procure PPE supplies that are inclusive to our population’s needs for communication access. Progress in this initiative will also help those with auditory processing disorder, ADHD, dyslexia, English language learners, those who speak English as a second language, and more. It also aids those without disabilities in cases of noise disruption and poor-sound environments. One’s life may depend upon audible understanding!
The Office for Civil Rights at the U.S. Department of Education defines accessibility as when a person with a disability is “afforded the opportunity to acquire the same information, engage in the same interactions, and enjoy the same services as a person without a disability in an equally effective and equally integrated manner, with substantially equivalent ease of use. The person with a disability must be able to obtain the information as fully, equally and independently as a person without a disability.”
Make some noise about this!…and make sure they see you smile!
Laura Sinclair, RD#1
ALDA Seacoast NH Group Leader
(this article is not meant as an endorsement of any product)
MATT’S MONEY MATTERS
By Matt Ferrara
The January ALDA Treasurer report was very optimistic. We made a $16,908 profit for ALDACon 2019 and ALDACon 2020 was off to a great start, but we know what has happened since that time.
This year’s ALDACon has been rescheduled for 2021. As a result, the ALDACon 2019 profit has been moved to the Operating Account.
The Balance Sheet for the ALDA Bank accounts as of the end of, June 2020
ALDA Operating Expenses: $65,469
ALDAcon 2021 Account: $11,144
ALDAcon 2022 Account -$2,758
ALDAcon 2023 Account: -$680
Scholarship Funds: $28,828
As of June 30, 2020, the total cash in the ALDA Bank accounts is $102,003.
The IRS 990 Report for 2019, IRS 1099 and 1098 forms and the State of Illinois Secretary Forms were completed and filed on time.
FINANCE COMMITTEE ASSISTANCE!
Now is the time to volunteer to help ALDA! We welcome at least two volunteers to serve on the Finance Committee. If you are interested in serving or have any suggestions for fundraising campaigns, please contact me at Treasurer@ALDA.org.
And, as a reminder, ALDA, Inc. is a non-profit corporation and donations may be tax deductible. Also, some employers do have matching donations plans. If you have any questions regarding donations, please contact me at Treasurer@ALDA.org.
Meandering Through a Hearing World
How To Choose An Audiologist
By: Linda Bilodeau
There is no question that COVID-19 has turned our lives upside down. Those living in cities, apartment buildings, or high-rises may be reassessing the safety of their living quarters and deciding to relocate. Some will have to move for jobs. Since ENT physicians and audiologists are vital in providing our hearing healthcare, migrating to a new state, city, or town brings on the issue of finding new providers.
When I moved from the Midwest to Florida fifteen years ago, I had to search for an ENT Physician and Audiologist. I found an ENT physician on the internet who worked with several other audiologists in the area. I chose one from his list because he was close by. This audiologist did not meet my needs as he had been trained by a hearing aid manufacturer and only dispensed their aids.
One way to find a good audiologist is to contact the members of hearing loss associations such as ALDA. ALDA has a great deal of information about hearing aids and cochlear implants on their website. Don’t be afraid to ask questions while you are researching audiologists. Find out if the audiologist works with aids from all the hearing aid manufacturers. Ask how often they perform hearing exams as well as the number of fittings they allow following the purchase of aids. Other important questions to consider asking are: What is their repair and replacement policy for aids? What is the wait time for appointments? How personable and available is the audiologist? Do they provide remote services? If you are a candidate for a cochlear implant be sure to find an audiologist and surgeon specializing in these devices.
A friend with hearing loss recommended my current audiologist. His practice was within a reasonable driving distance from my home. His website indicated that he worked with all of the hearing aid manufacturers. He had recently completed an Au.D program and was licensed in Florida. Though I had my hearing records, my new audiologist suggested repeating my hearing exam, saying it was important to have accurate information. The hearing test would be done free of charge if I purchased new aids. He stated that he repeats audiograms annually and does them more frequently if his patients notice a change in their hearing.
After explaining the findings on my audiogram and word recognition scores, we had a long conversation about my social life and hobbies. He suggested that since I was socially engaged, I needed aids that would keep up with me, and he recommended aids from several manufacturers. My new aids came with a three-year warranty, and for a minimal fee, insurance was available to cover repair or replacement should the aids be lost or damaged.
Sometimes people purchase hearing aids from Costco instead of a private audiologist because the aids are less expensive. Before choosing Costco, ask about the credentials of the person dispensing the aids. You should also find out if an annual hearing test is included in the purchase of your aids and how often your aids will be fitted. Understand what will happen should you damage or lose your aids. Realize that you might not always see the same hearing specialist or audiologist each time you visit the hearing center at Costco.
If you decide to purchase hearing aids online and then meet with an audiologist for fittings, keep in mind that an audiologist will charge you for an office visit. They may not be able to insure your aids. Be cautious if you purchase aids online. Make sure they meet your hearing needs.
As we meander through the hearing world, know that it is important to treat hearing loss. To do so, find a good audiologist and ENT physician who will work to keep you in the best hearing health.
CHAPTER and GROUP Happenings
2020 2nd quarter edition
by RD#1 Laura Sinclair
April began with a day-after April Fool’s Day ALDA Board meeting. These virtual board meetings are fascinating! I had not used much video chat, if at all, but now to date have many hours under my belt. The new “normal” way of visiting, working, and health care has been challenging but we are learning new things which is always good.
Some very creative minds have brought clarity to the means to which we individually can navigate communication with hearing loss. All the platforms… you’ve heard about them…Zoom, Google Meet, Microsoft Teams… have tiers of service from free to expensive, connecting from two to hundreds of people. Skype, What’s App, Facetime, Google Duo seem like child’s play now. There is a place for them all, however.
I am “attending” church with Facebook Live broadcast through my laptop via HDMI cord to my TV with the loop activated so I get audio straight to my bilateral cochlear implants while using Live Transcribe on my Android cell phone and the liturgy pulled up on my iPad! WHEW! Or I can let Facebook caption using AI so that I can make comments and say “hello” to the others watching from wherever.
I’ve hopped on interactive Meet-Ups and non-interactive Webinars. RD3 Debbe Hagner facilitated a virtual meeting by ALDA Suncoast featuring ALDA President Rick Brown where we learned of his lifelong journey dedicated to the betterment of those with hearing loss. It was great to see Florida ALDAn’s met at past Cons…an all too real reminder of what we will miss with the postponement of our Niagara Falls Con to 2021. All the RD’s have Zoomed with the help of past President Sharaine Roberts and guest Wendy Ting (Membership Committee Chair). The host of the meetings can arrange ASL interpretation and a CART captioner who can save and send the transcript straight to your documents to review at your leisure afterwards to recapture whatever may have been missed if it is difficult to read ASL or captions while looking at Brady Bunch icons of participants. When RD2 Diane McDonaugh facilitated a Zoom meeting, there was the added advantage of her ASL skills. Automated captioning options are a mixed bag with many adding more confusion instead of less with bizarre words displayed.
In June, the ALDA Boston Chapter hosted a virtual lecture with Museum of Fine Arts tour guide Karen Moss. The virtual lecture was interactive and a nice hiatus from the seriousness of the pandemic, which keeps us apart. What helps when participating is, if your mic isn’t already pre-set to mute, to keep track of background noise around your device so as not to degrade the audio for everyone. It can truly be horrendous when multiplied by many mics on! There are inexpensive cords and remote mics that can turn an echo-ladden broadcast to a crystal-clear transmission. That techie person in your life is your best resource!
Some questions were sent to my attention via the ALDA website. Topics ranged from alerting devices in the home to workplace ADA accommodations in view of mask requirements. One answer doesn’t fit all so this often becomes a discussion of how to fine-tune solutions.
I have been reading many hearing loss publications to keep abreast of current and future possibilities such as two of the major cochlear implant companies coming out with more advanced all-in-one devices that are rechargeable and water-resistant! Thankfully, scientific advances still move forward…
The ALDA Seacoast NH Group has not met at our regular location or the library, which remains under renovation and we have not caught on fully to the virtual meeting. However some of us join the routine Meet-Up Zoom hosted by ALDA members Linda Marple and Dianna Landers in Massachusetts. We even saw our own VP Cynthia Moynihan present on Canine Companions and how to run a Zoom meeting! With a steady and growing number of participants, Linda and Dianna are welcoming hosts who post notice of these meetings on their Facebook page and through their Meet-Up membership. You can “dial-in” or click a Zoom Meeting ID link. If you have the Zoom app, you can activate auto captioning. We learned a computer screen gives the best experience followed by a tablet and lastly a cell phone, simply due so the screen size and ability to “see” all attendees. The screen view can be modified by the individual to either favor faces, chat feature or captioning. Our ALDA Secretary, Tina Childress, has been kind enough to sit in with her Live Transcribe dialed in as a participant to help those without captioning. I finally have a similar set-up having slowly caught on to how to manage different devices and remain in the testing phase on the reliability to facilitate such an experience.
ALDA Boston Chapter has had to postpone their Board elections due to COVID-19. Their monthly meetings and 4th of July party also have fallen off but Francine Steiglitz continues daily communication to the membership with notice of state official’s press conferences and monthly ALDAgram. Always upbeat and informational, I am humbled by her outreach and commitment. Look for election outcomes this Fall!
The email outreach to all RD1 members garnered a bit of email addresses fixes and updates from folks spread far and wide. Some may wish to connect to a virtual meeting of an existing Chapter, Group or start their own simply based on interests instead of physical location. The possibilities are endless! We invite anyone to contact your RD to help connect with other members. All we need do is get the ok to share contact information between parties and off you go! A new Chapter or Group in the making!! ALDA Suncoast Chapter (FL) and ALDA San Jose (CA) Group are two that already have open invitations for anyone to attend their Zoom/Google Meet virtual meetings so you can get your feet wet.
I have had few face-to-face visits with others seeking help with their hearing loss. I have the beach nearby and town parks where we can socially distance and, being in NH, I LOVE the expanded outside seating at restaurants and such that isn’t usual when living up north. I can hear much better without all the background noise inside restaurants. I am thankful we live in a time where technology helps but even the simplest of human interactions like saying “hello” while out for a walk lends us all to adopt simple sign language in the form of a hand wave. “Whatever works!”
My newest apps are BuzzCards and Cardzilla to instantly explain what, where & how to get a clear mouth mask. Thanks ALDA Social Media’s Ken Arcia & Jim Laffer for the heads up on these! I don’t go anywhere without my clear mouth mask or cell phone! I handed out eight free trial clear mouth masks to fellow RD members and professionals with vested interests in gathering data on how best to make lipreading accessible safely. This is an expanding initiative the Board is taking on seriously so you will be hearing a lot about it! Keep tuned to Facebook and Instagram postings or find resources on the website.
Many thanks to the rest of our ALDA Board and Committees for keeping us running! You are all vital and appreciated! To our members, please keep connected with us and each other. The Board is always open to more volunteers and suggestions on how to move forward. Without our convention this Fall, we will be feeling a loss of our “family”. Let’s not let the distance keep us from singing out “You are the Wind Beneath My Wings”.
Sign Language Online
A Pilot trial of Sign Language was a success for 8 weeks this summer. Tina Childress and Ken Arcia were so wonderful and helpful. Tina used her cell phone with CC on Zoom meetings, and she translated for my voice. Ken was taking care of technical and installing the videos for the members. Thank you to both of them for doing an excellent job! I heard that Zoom will add CC in the near future, and it will be awesome!
The members of ALDA were very motivated in learning sign language and participated by playing games, reviewing with sign, numbers, etc. It was a lot of fun! On the last day of the Sign Language online, they wanted to continue learning more signs for 8 weeks. For members of ALDA only, if you are interested in taking Sign Language online, please contact us: Diane McDonagh (RD2@alda.org), Tina Childress (Secretary@alda.org), and Ken Arcia (ALDA96Ken@gmail.com) or at alda.org/contact/ We look forward to hearing from you.
June 26, 2020 meeting
by RD3 Debbe Hagner
Our June 2020 ALDA Suncoast meeting was held online via Zoom, and we had approximately 14 members sign-on. Tess Crowder provided CART and our volunteer interpreters attended. We discussed Hurricane Safety and emergency preparedness with Mary Burrell from Pinellas County Emergency Management here in Florida.
Mary Burrell shared a PowerPoint program showing us various dangers and classifications of a storm. She also explained how the county will manage distancing and family placement in shelters, which will be open but isolation or distancing will be a challenge. It is a priority to have your emergency contact information as well as an emergency kit packed with food, water, and supplies. It was an informative meeting for all.
We also had a meeting in May via Zoom just to socialize and connect, We faced some technical difficulties including our meeting being hijacked by hackers! We quickly adjusted with a new meeting link and password. Even with hiccups we had a great time.
As RD3, I hope to have a Zoom meeting in July and invite all of the southern states. I would be happy to help other areas to set up Zoom meetings.
There is also a small group of people that meet on Zoom every Thursday to have a “Happy Hour” – chit chat. One time we talked for three hours! We always look forward to “Thursday Happy Hour.” We had to set up some communication guidelines, such as raising your hand if you want to speak (sign). The host will then recognize you to speak so that way not all people are speaking (signing) at the same time. Sometimes it can get confusing, but it is always FUN!
I also host my own Genealogy Society zoom meetings. Lately, I have attended a lot of zoom meetings about DNA and various advanced genealogy topics. I hope to start teaching a genealogy class for people who are deaf and hard of hearing after I finish my scanning project.
Thanks to our ALDA Chapter and Groups we are reaching more individuals dealing with hearing loss and late-deafness. Support your local Chapter or Group or start your own today!
Per the new submission guidelines provided, ALDA chapter and groups can now submit their reports directly to ALDA News Submissions email@example.com
Please advise if your chapter/group are using other outlets to share your news and events.
Masks and Shields
The best ways to prevent the spread of COVID-19 are: 1.) facial coverings and/or face shields, 2.) social distancing at least 6 feet apart and 3.) hand washing.
The Centers for Disease Control and Prevention (CDC) has provided guidance on face coverings/shields, though it should be noted that this guidance has changed over time as we have learned more about how the virus can spread. In the past few months, the CDC, U.S. Food & Drug Administration (FDA) and the National Institutes of Health (NIH) have been focusing on preventing transmission via person to person contact. COVID is spread when aerosolized respiratory droplets are dispersed from an infected person when they cough, sneeze or talk. We are seeing more messaging and mandates about using face coverings/shields as a result of this.
For individuals who are Deaf/Hard of Hearing, this has resulted in communication difficulties and anxiety, since visual cues are no longer provided, and speech has become quieter and more muffled.
Which face mask or shield is “best”? In my opinion, it’s like asking what shoe is “best” – it depends on the individual and the situation.
As an audiologist in a health care setting, my practice will be adjusting our protocol to minimize close patient contact but we will be using masks AND shields when we do have to perform certain procedures when we are close to you.
When I spend some time outdoors with my family, we try to find places where there are not a lot of people. When we do encounter some people, I may just be using a cloth mask OR a shield while keeping my distance as much as possible. Luckily, my family can all use sign language when I am not able to understand them with my cochlear implants.
If I have to run out to the grocery store by myself, I tend to use a mask with a clear window not only to help others understand me better but also to raise awareness of masks with this option. In those situations when I am not able to understand what someone is saying, I use a speech-to-text app on my smartphone with a small external mic plugged in so it can reach people farther away.
Be sure to check with your local public health department to see what is allowed. Guidance can change from day-to-day and there are some situations where face shields alone are and are not acceptable.
My friends joke that I’m a “mask and shield hoarder” since I have quite a collection going. What are my favorite features for masks and shields?
Clear window – If I want others to wear a mask with a clear window, then I am going to model this as well. It is also helpful to use when I am with my Deaf/Hard of Hearing friends and colleagues. I prefer a clear window size that is large enough to see my entire mouth and is made of a more rigid plastic so that when I breathe, the plastic doesn’t get sucked to my lips. Fogging will be an issue with ALL clear windows so pre-treating them with something like a drop of soap or dish soap or applying anti-fogging spray is recommended.
Style – I prefer a mask that has darts in it compared to a flat panel. The darts help to bring the mask off my face a little bit so I have more room to breathe and talk as opposed to a flat panel style.
Nose piece – Some masks have nose pieces that are either sewn into the mask or can be applied with an adhesive back. They serve to better shape the mask to your nose and prevent droplets from escaping which also helps prevent your glasses from fogging up. Adjustable ties – I wear glasses and have bilateral cochlear implants and do not have a lot of room behind my (apparently small) ears. When I have used masks with ear loops, I’ve had to take off my cochlear implants, put on the mask, and then put on the ear loops. For me, I have found that adjustable straps that fit behind my head work best.
Breath-ability and temperature – It appears that masks that are made of cotton are more breathable than those of other materials. They are also less likely to make you feel hot.
Reusable/washable – I’m still looking for that perfect mask that has a removable vinyl window. In the meantime, I wash my masks by hand and let them air dry.
Velcro strap – I prefer shields with this feature because it doesn’t get stretched out like elastic straps can. It seems to also be easier to put on when I am also trying to make sure my cochlear implant headpieces are in place.
Length and wrap around – The shield will be most protective for others if it extends below the chin and wraps around to the back. There are even face shields that can attach to the bill of a baseball cap.
Cloth extensions – This feature is found on only a few select shields. It gives the appearance of being a beekeeper. In my opinion, this is the best solution because it gives full facial access with the shield portion and then the cloth extensions can help prevent respiratory droplets from escaping.
Reusable/washable – Shields are typically more expensive than masks so being able to safely use them for extended periods or more than once is ideal.
For both masks and shields, individuals who are Deaf/Hard of Hearing need to recognize that sounds may also be compromised. People note that speech can be softer in some masks and be more echoey to the speaker and listener when using face shields. For me, I would rather have access to more visual cues so the fact that sounds are more degraded isn’t that much of an issue for me.
If you can, I would encourage you to try different products and talk to others to see what they like. Perhaps you can even create your own! Just like some people prefer heels or dress shoes, others prefer sandals or sneakers. The important thing is USING them.
If you’d like more information, I have (co)created some additional resources:
My blog has a survey about features they like/don’t like for masks and shields.
A Knowledge Base that I co-created with a friend outlines a variety of different masks and shields, vendors, DIY patterns and tips for preventing fogging.
If you have any further questions or comments, feel free to contact me at firstname.lastname@example.org or at email@example.com!
~ Tina Childress ~
One of Us
This issue’s interview is with Celeste Cadematori
Celeste Cadematori is the ever-patient registration chair for the next ALDAcon in Niagara Falls. Celeste hails from the San Francisco Bay Area and now resides in Mountain View, California. Celeste has been profoundly deaf since she was about 8 months old and lost most of her “good” residual hearing by the time she was 13. She’s single, now retired, and definitely one of the California girls we all wish we could be. Enjoy this interview and gain some insight on why Celeste is definitely “one of us”.
KK: What book or books do you recommend others read?
CC: I totally recommend “Deaf Again” and “On the Fence: The Hidden World of the HOH” By Mark Drolsbaugh
KK: You simply cannot live without…..
CC: SUN and Water
KK: Your little known talent is:
CC: I can read lips upside down
KK: The hardest thing you’ve done is:
CC: Advocating for myself and getting interpreters for Culinary School
KK: What is your funniest hearing loss moment?
CC: When someone said something about me to someone else thinking I wouldn’t hear/understand and was shocked when I was able to repeat what he said verbatim. You can never know when something can or cannot be heard/understood.
KK: When and how did you learn about ALDA?
CC: I was first introduced to ALDA in 1997 when Ken Arcia invited me to Nancy Hammon’s Fourth of July party. I was re-introduced when I met Diane McDonagh and Wendy Ting at HLAA conference in MN 2018 and finally, Tina Childress invited me to come to the PDX ALDAcon 2018.
KK: Do you belong to an ALDA chapter or group?
CC: Yes, ALDA San Jose
KK: Have you ever attended an ALDAcon? (If so, which ALDAcon was your first conference?)
CC: Yes, PDX 2018
KK: In what ways has ALDA enhanced your life?
CC: ALDA has given me a place where I am FREE to be a fencer. (I recommend reading “On the Fence”
to understand that term)
KK: Who or what inspires you the most?
CC: I find inspiration from the following from Dr. Seuss: Life is too short to wake up in the morning with regrets. So, love the people who treat you right and forget about the ones who don’t. And believe that everything happens for a reason… If you get a chance- take it; if it changes your life- let it. Nobody said that it would be easy. They just promised it would be worth it.
KK: People would be surprised to learn that you…..
CC: Trained for and completed 2 Ironman triathlons.
KK: Your biggest pet peeve is:
CC: Being underestimated just because I am deaf.
KK: What is your favorite childhood memory?
CC: Cooking and baking with my grandma, especially during the summer months when we would harvest and preserve all the fruit from the fruits trees in our yard.
KK: Your favorite saying is:
CC: “A mind that is stretched by a new experience can never go back to its old dimensions” ~Oliver Wendell Holmes Jr.
KK: The bottom line is:
CC: Live and let live, Love and let love, Be and let be