The Power of a Mother’s Advocacy

By Vicky Chan

Like most moms, Brandy has always been a champion for her three sons, Anthony, 12, Andersyn, 10, and Ayden, 7. Her sons are unlike most sons; each has bilateral sensorineural hearing loss and enlarged vestibular aqueduct syndrome.

Brandy’s journey as a parent-advocate had a difficult start. She was completely unfamiliar with hearing loss in children before she became a mother, and accessing proper treatment for the trio was a challenge. Brandy juggled numerous audiologist appointments that were a five-hour round-trip drive from home. And, for her oldest child, Anthony, a hearing loss diagnosis came two years delayed.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Anthony had typical speech development and passed all his first- and second-year wellness and hearing checks by his pediatrician. When he was 2, Anthony fell and hit his head. Brandy suspected the trauma had caused either hearing loss or a cognitive disorder, but the doctors assured her Anthony suffered no permanent damage and took no action for him.

Brandy’s instincts were correct. When her second child, Andersyn, was diagnosed with hearing loss at birth a few months after Anthony’s head injury, she insisted Anthony receive a detailed hearing evaluation. Born in 2005, Anthony never received a newborn screening despite the passage of the Newborn and Infant Hearing Screening and Intervention Act of 1999, which mandated the practice.

The legislation quickly improved the rate of newborn hearing screening. In 2005, 94.2% of babies in the U.S. were screened, but some states lagged behind. In Tennessee, where all three of Brandy’s sons were born, only 66.9% of newborns were tested—the lowest in the nation. Unfortunately, Anthony was among the 30.1% of Tennessee’s babies not screened. However, by Andersyn’s birth in 2007, the state’s rate increased to 91%. It was only due to Brandy’s perseverance that Anthony was ultimately given a comprehensive exam, diagnosed with severe bilateral hearing loss, and fitted for hearing aids.

Brandy’s message is that newborn screening is vital. “If your child has hearing loss, it is best to start intervention as soon as possible and have your child fitted for hearing aids or cochlear implants if they need them.”

With his hearing aids, Anthony was fascinated by all the new sounds he could hear—including the squishy sound of Brandy’s flip-flops as the pair walked through a parking lot. At that moment, Brandy realized it was likely that Anthony, like Andersyn, was born with hearing loss, but it only became detectable to her after his head injury.

Andersyn was given a newborn hearing test so Brandy knew immediately that he had severe bilateral hearing loss. Later on, one audiologist suggested he wasn’t benefiting from his hearing aids, but Brandy knew differently; with Andersyn’s hearing aids turned up, a sound as subtle as crinkling paper near his ears would startle him. Andersyn now does exceptionally well with hearing aids, as does Brandy’s third and youngest child, Ayden, who was also born with severe hearing loss in both ears. The boys’ doctors have cited a genetic connection of unknown cause.

Today, hearing loss is an ordinary part of life for her three boys, thanks to Brandy’s tireless advocacy. With help from FM systems and speech therapy, Anthony, Andersyn, and Ayden all receive a mainstream education. They enjoy baseball, basketball, hunting, swimming, riding four wheelers, and fishing. HHF’s CEO, Nadine Dehgan, exclaims, “All three boys are incredibly fortunate to have Brandy, a devoted mother who has prioritized their hearing health.”

Anthony, Andersyn, and Ayden are participants in HHF's "Faces of Hearing Loss" campaign.

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Universal Newborn Hearing Screening to Prevail Under EHDI Act of 2017

By Nadine Dehgan

Federal funding for universal newborn hearing screening will prevail until 2022 under the The Early Hearing Detection and Intervention (EHDI) Act of 2017, which officially became law last month. Hearing Health Foundation (HHF) is ecstatic that there was bipartisan support for critical early testing and intervention for children with hearing loss.

Introduced in March by Representatives Brett Guthrie (R-KY) and Doris Matsui (D-CA) as an amendment to the Public Health Service Act, the EHDI calls for early detection, diagnosis, and treatment of deaf and hard-of-hearing newborns, infants, and young children. Each day nationwide, 33 newborn babies—approximately three out of every 1,000 births—are diagnosed with hearing loss, making it the most common congenital birth defect. Left undetected, hearing loss can negatively impact a child’s speech and language acquisition, academic achievement, and social and emotional development.

HHF, a long-time supporter of universal hearing screening for newborns, applauds the enactment. HHF was instrumental in highlighting the need for similar legislation in the 1990s. In 1993, only 5% of newborns were tested at birth for hearing loss. By 1997, 94% were tested before leaving the hospital, and today 97% of babies are screened before they leave the hospital.

Earlier drafts of the federal budget put the coverage of these crucial procedures at risk, prompting legislators in both the Republican and Democratic Parties to take action quickly. In addition to the bill in the House, a companion measure was introduced in the Senate by Senators Rob Portman (R-OH) and Tim Kaine (D-VA). In early October, the House passed the Act following the Senate’s unanimous approval in September.

“This program exemplifies the importance of early detection and intervention,” said Congresswoman Matsui. “By ensuring that infants have access to hearing screenings at birth, parents can make informed choices about their care management early on. This is critically important, given that so much of a child’s development happens in the first few years of their life. I’m pleased that through the passage of this legislation, the newborn screening and intervention program can continue to improve health outcomes for kids.”

I Will Never Know What It’s Like to Not Feel Dizzy: My Ménière's Journey

By Lauren Edmiston

I can still remember the beginning—it’s my earliest childhood memory.

I was in the hallway of a house with my mom, my grandfather, and my brother when I started to feel weird, so I ducked into a walk-in closet to recover. Down on my hands and knees in the closet, the floor was caving in. I began falling in lightning speed, couldn't grab anything, and could only see bits and pieces of light. My surroundings were blurry.

I was a four-year-old girl simply exploring the hallway of a house. That first memory was, in fact, my first ever full-blown episode of vertigo.

I was taken to the hospital for my first of many tests and doctor's visits as a child. Vertigo was not on anyone’s radar, much less Ménière's disease for someone so young. I was misdiagnosed repeatedly, starting with potential brain tumors and neurological disorders.

The dizzy spells continued throughout my childhood and became normal to me. Waking up some mornings and not being able to get out of bed was normal. Not being able to function with tall ceilings was normal. Sitting at church knowing that if I stood up from the pew to take about five steps I’d have an episode was normal. That sensation that starts out much like an anxiety attack, a sensation that I’d feel through my entire body before suddenly spinning uncontrollably, was normal. But it wasn't normal. I advocate for that little girl today because now I know the truth. It was a hard journey learning that I was different.

I was homeschooled, so it wasn’t until around age eight when I realized that not all kids functioned like I did and that there was something "wrong" with me. I was determined to do things my friends did, like gymnastics and soccer. Yes, I did both. Yes, I fell on the balance beam. Yes, I fell on the field. But I kept going.

Adulthood is not easy with Ménière's disease. But childhood with Ménière's disease? It shouldn't happen. Ménière's disease was still not an option or even discussed because of my age. I was 10 when my mother's best friend was diagnosed with Ménière's and recommended a doctor at the ear clinic. My mother’s friend and I always had similar quirks, after all.

I went and, just like that, I was diagnosed—officially this time. Six years of being “just a little different" instantly explained. But also, just like that, there was the realization that not a whole lot could be done. It was not very common to be a child with Ménière's disease—in both ears.

I entered a remission phase at 19 and I'm now 26 with two kids. I still have Ménière's and I will never know what it's like to not be dizzy. I still experience the dreaded ringing and fullness. I'm still incredibly sound-sensitive and I still have days where I wonder how I'm going to get through it with my kids.

I tell my story for parents that might be going through Ménière's with their children. I tell it for people that read my words and can relate to every single one. You’re not alone. You’re not just sensitive to your surroundings. You’re not over exaggerating; you fight a silent illness, you navigate an alternate universe. Never stop fighting for a better quality of life.

But, also, remember to share your story with honor. If you can relate, you can help impact lives of people just like you and me.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

The Path to Funding for Universal Newborn Hearing Screening

By Pranav Parikh

Due to the complexities of a multi-trillion-dollar federal budget, it can often be difficult to understand where all the money ends up. For recipients of Medicaid and their children, part of the government’s longstanding policy is to provide access to quality healthcare low-income communities could not otherwise afford. Medicaid recipients represent approximately 23 percent of the total U.S. population, with an enrollment of 74,550,529 individuals.

According to President Donald Trump’s Fiscal Year (FY) 2018 proposed budget, deemed the “America First” budget, and a nonpartisan CBO report, Medicaid will receive cuts totaling $610 billion USD over the next 10 years. In 2015, the U.S. Government spent $545.1 billion USD on Medicaid services. President Trump alludes to waste and redundancies as his justification of the proposed cuts.

One of the planned cuts will negatively impact newborn children and be detrimental to the well-being of infants across the country: Universal Newborn Hearing Screening. The terrifying impact is summarized below.
 

What exactly is being removed?
In his FY18 proposed budget, President Trump upheld his campaign promise by cutting what he deems “unnecessary and wasteful spending.” Unfortunately, one program that got the axe was the $18 million USD allocated towards newborn hearing screenings. This earmarked funding has doubled the percentage of newborns receiving hearing screenings before leaving the hospital from 46.5% to 97% just in the last decade. Without early detection, children will be at a distinct disadvantage in tackling hearing loss present at birth.

Why does this matter?
Every day, 33 children are born with some form of hearing loss, designating hearing loss as the most common congenital birth defect in the U.S. Reasons babies may have hearing loss present at birth include an inherited trait, ototoxic chemical, or a viral infection during a mother’s pregnancy. Challenges associated with having hearing loss can be overcome through early intervention, however it is imperative treatment and therapy are started as early as possible. As stated on the U.S. Government Department of Health and Human Services website, “If not identified early, [hearing loss] is likely to delay or impair a child’s development. Hearing problems are difficult to detect through observation alone, so almost all newborns have their hearing checked with special equipment.” 

What types of tests are done?
Aside from behavioral characteristics displayed by infants with hearing loss, there are two main tests conducted by physicians to determine any level of auditory impairment. The first of which is called Otoacoustic Emissions, a test designed to the test functionality of outer hair cells. A negative reading on this test is typically associated with cochlear dysfunction. The second test is called Auditory Brainstem Response (ABR) and determines activity of the auditory nerve through stimulation in the baby’s ear. A negative reading on this test indicates some issue with the vestibulocochlear nerve such as auditory neuropathy, but could also indicate problems with other parts of the ear. Both of these tests can be done while the baby is asleep and offer more concrete evidence to either rule out or diagnose infant hearing loss.

Have studies shown early intervention to be more effectual than later in childhood?
Yes, there are many studies that have shown that early intervention, especially for those receiving treatment within the first six months after birth, increases levels of cognitive function and advanced development. The control group of one study, led by Dr. Christine Yoshinaga-Itano at the University of Colorado-Boulder, showed that those who did not receive treatment or therapy within the first six months after birth had greater difficulty with oral communication and language comprehension.

What happens if children have undiagnosed hearing loss?
Hearing loss as a condition can present a number of symptoms associated with other disabilities, leading to improper diagnoses. For example, when children exhibit a lack of response to loud noise, or don't answer when spoken to, they sometimes are misdiagnosed by professionals as being autistic. If hearing loss is present and detected at birth, doctors will have access to necessary information earlier and children will be better off in the long run in developing their communication and learning abilities.

If funding for newborn hearing screening is decreased or removed entirely, what does that mean for those suffering from hearing loss?
At the moment, only 67.1% of those diagnosed with hearing loss receive early intervention before six months of age. With lower early detection and screening rates, this percentage will drop further. Without early intervention programs in place, children are at a noticeable disadvantage in developing hearing and speech functionality. After the age of three, it is considerably more difficult for children to develop the speaking and listening skills that are in line with their typical-hearing peers.

Would early intervention actually save money down the road in potential education costs?Some students with hearing loss utilize special education services, such as CART or note-taking, to ensure they don’t miss any of the materials and learnings while in the classroom. Access to the necessary technology and equipment, as well as highly trained teachers, is an expense incurred by school districts across the country.

A recent report released by the National Center for Hearing Assessment and Management states that treatment of hearing loss in children within the first three months of life can save up to $400,000 USD in eventual special educational costs by the time the hard of hearing student graduates high school. By bridging the gap early, and ensuring better interpersonal and cognitive skills in the first years of age, these children will require much less specialized instruction in future years. Essentially, early detection and intervention pays for itself.

Is there any legislation, not including the President’s proposed budget, that addresses this issue?
In March 2017, the Early Hearing Detection and Intervention (EDHI) Act was introduced on the House floor by Representatives Doris Matsui (D-CA-06) and Brett Guthrie (R-KY-02). A companion measure was also introduced in the Senate by Senators Rob Portman (R-OH) and Tim Kaine (D-VA). EHDI reauthorizes funding for Universal Newborn Hearing Screening for the next five (5) years, as well as establishes a database hub to collect information on the results of these tests. If the measure passes, parents will be assured of their child’s hearing health, and one of the nation’s largest public health concerns receives the necessary attention it deserves.

Undoubtedly, funding for newborn hearing screening is imperative. Hearing Health Foundation (HHF)'s Pranav Parikh spoke with Congresswoman Matsui’s staff on the reasons for proposing the legislation, and why she took the lead on tackling such an important issue. “So much of a child’s development happens in the first few years of their life, which is why early detection and intervention is so important,” said Matsui. “This bill will ensure that more infants have access to critical hearing screenings, so parents can be informed about the options for their children’s care.” It is comforting to know children suffering with hearing loss have an ally in our nation’s capital.

As Vickie Glenn, a Medicaid Coordinator for Tri-County Special Education recently stated in a New York Times article, “This isn’t Republicans or Democrats. It’s just kids.” Fortunately, President Trump’s proposed budget appears to be a “purely political document,” according to Peter Coy from Bloomberg BusinessWeek, possibly serving as a trial balloon and nothing more. Congress, even with a conservative majority consisting of many fiscal hawks, will likely reject many of the proposed cuts, as Texas Senator and chairman of the Freedom Caucus John Cornyn remarked, “we know the President’s budget isn’t going to be passed as is.” For now, at least, Universal Newborn Hearing Screening will receive its necessary and deserved funding.

And, finally, an urgent call to action from Nadine Deghan, CEO of HHF:
HHF has strongly supported Newborn Hearing Screening. In the 1990s, we championed legislation to encourage these simple but critical tests for our nation’s babies. For those who feel passionately about newborn screening funding, please contact your Congressional Representative and your Senator to let them know your views.

Support HHF This Mother's Day

By Heather Friedman

Laura (second from left) with her sister in-law Liza, her maternal Grandmother and Aunt, with Heather on the far right.

For three and a half years my daughter, Laura, attempted to hear and to be understood. As her mother, I struggled to make sense of her difficulties—which I knew in my heart did not stem from developmental or attention deficit disorders.

Prior to her diagnoses at three and a half, Laura had a very difficult time communicating. I took her to specialists and started her on speech therapy, with little result. When Laura was finally diagnosed and fitted with hearing aids, things began to fall into place.

When Laura finally received the correct diagnosis—hearing loss—I was relieved. Parents and children should not have to wait over three years to have this condition detected, struggling all the while with delays hampering social and emotional growth. Parents should not have to go through the pain of knowing something is holding their baby back, when it could be so easily detected.

In 1993, four years after Laura was born, Hearing Health Foundation’s steadfast advocacy work led to the passing of Universal Newborn Hearing Screening Legislation. As a result—today, 97% of American babies are tested for hearing loss at birth. This means newborns with hearing loss can immediately get the help they need through technology such as hearing aids and cochlear implants, as well as speech and language therapy. This means an easier life, from birth, for children with hearing loss.

Today, I am proud to say that Laura is a happy and successful adult. In fact, she is such a staunch champion for people with hearing loss that when a job became available at Hearing Health Foundation, she jumped at the chance to work there! As Hearing Health Foundation’s Communications and Programs Manager, Laura works hard to advocate for those with hearing loss, to prevent hearing loss, and most importantly to raise funds to research for a cure.

It is my hope that she can one day benefit from her tireless efforts. Your support can make my dream for her, and other people living with hearing loss, a reality. A gift to this amazing organization is a gift to all people with hearing loss, as well as to their families!

This Mother's Day, Hearing Health Foundation would like to shine a light on all Mothers for all they do for their children and families.

Please consider giving a gift in Honor or in Memory of a wonderful Mother you know. Your gift will be used to fund groundbreaking research to prevent and cure Hearing Loss and Tinnitus and to promote hearing health.

Using Words Carefully

By Jane Madell, Au.D.

We are all influenced by words. Some have easy, uncomplicated meanings (book, tree, house) and others carry a lot of emotional baggage (disabled, slow, delayed, etc.). When audiologists talk with families and children we are working with, we need to think carefully about how we describe children and test results. We do not want our words to interfere with our message.

Normal vs. Abnormal

What does it mean to say that a child’s behavior or test results are “abnormal”? Is there another way we can discuss this? Can we talk about what we expect to see and compare it to what we are seeing? We need to be sure we are talking about a specific test or behavior and not making a statement about the whole child. We need to be sure we are not saying, “Your child is abnormal.” We are saying, “Your child’s hearing is abnormal.” In audiology we might say, “Children with typical hearing have responses above this line on the audiogram. Your child’s hearing is below this line.” When describing speech perception testing, we can talk about what typical children can understand and what we may need to do to help this child understand speech better. A speech-language pathologist or listening and spoken language specialist might say, “Children with typical language development have a vocabulary of XX words at this age, your child has a vocabulary of XX words.”

Describing strengths and weaknesses

It is more useful to describe a child’s strength and weaknesses than to describe a child as having a disability (unless you are trying to get a school district to agree to services in an Individualized Education Program (IEP) meeting). Labeling a child as “disabled” does nothing to plan remediation. It is much more useful to make a list of strengths and areas of weakness. The areas of weakness, carefully defined, can result in a treatment plan. If testing identifies a hearing loss, it provides an opportunity to discuss possibilities for remediation such as selecting technology or determining therapy options. If a speech-language evaluation indicates specific areas of weakness (e.g, vocabulary, auditory memory, etc.), the report should discuss how these areas of weakness will affect language and literacy, and the therapy plan should specifically list areas to be worked on to improve skills.

When discussing test results with a child we need to remember that this is likely going to be distressing and we need remind the child that everyone has areas of strength and weakness, and we need to be sure to remind her what her strengths are.

Giving criticism or suggestions

Kids with hearing loss and other disabilities that affect access to academic information find it difficult to deal with the constant need for extra help, etc. They spend hours a week in therapy of one kind or another where they are working on areas of weakness and things that are difficult. They may be receiving preview and review services in school to help them keep up. The very fact that they need to go to see the teacher of the deaf for these services is an indication to the child that he is different than the other kids in his classroom. We need to be sure we are providing positive feedback along with areas needing improvement. If we need to give criticism, sandwich it between positive statements. While we need to give kids honest information, we need to be careful how we explain it. There is no value in telling kids that their work is “bad” or “poor,” or that “if they worked harder they would be able to do better.” We need to encourage them to work hard, but we will accomplish it more easily by being positive.

Teaching self-advocacy

An important part of success is helping kids advocate for themselves. It is very tempting as parents and professionals to advocate for our children. But we are not always there, so we need to help kids learn to advocate for themselves. They need to understand that they have a disability, and while this is not a statement about who they are as a person, it is a statement about what is needed to help them hear or learn. Talk about how to, recognize when you have missed something, and how to ask for help. If you do not know what page the teacher said to go to, raise your hand and ask for repetition, or look at your neighbor’s book. If you do not hear the answers of other kids to a teacher’s questions, ask the teacher to repeat. If you miss a friend’s comment, ask what was said. Practicing how to ask is very useful with parents or therapists modeling how to ask.

Introducing kids to others with the same disability

Kids need to know that they are not alone. When working with a child with hearing loss, it is useful to introduce them to other kids and to adults who have hearing loss. If there are celebrities who have hearing loss, it will make kids feel terrific to know about them. It helps them to understand that hearing loss is not going to interfere with being who they want to be. When it became public that Derrick Coleman has a hearing loss, it gave a boost to a lot of kids with hearing loss. I personally loved the commercial that Duracell put out with him saying something like, “They told me I couldn’t do this, but I was deaf so I didn’t listen.” What a powerful statement for kids!! Meeting physicians, audiologists, or teachers with hearing loss opens doors for kids. Audiologists, speech-language pathologists, listening and spoken language specialists, teachers of the deaf, and families can seek out adults with hearing loss for kids and parents to meet. It will help everyone feel stronger.

This post originally appeared on Hearing Health @ Hearing Health & Technology Matters’ blog on June 16, 2015. The author, Jane Madell, Au.D., is an audiologist, speech-language pathologist, and auditory verbal therapist with 40-plus years of experience in the greater New York City area.  

Advocacy at Work

By Kathi Mestayer

Ever had a hard time hearing in the hospital? Or visited someone who did? You're in good company. Hospitals can be very noisy, with alarms, footsteps, noise from machines, televisions, and clanging carts and food trays. For starters.

And I would argue that the hospital is one of the most important places to hear things right. The two phrases "So, are you in any pain now?" and "You know what to do if you're in any pain, now?" can sound really, really similar to a person just out of surgery and who uses a cochlear implant.

In this actual situation, the patient—my father—answered, "Yes," which meant two very different things to each party. The nurse thought "yes" meant “Yes, I know what to do if I'm in pain," but what it really meant was, "Yes, I am in pain now." Over the course of 45 minutes, after multiple attempts by the patient to get help via the intercom system to contact the nurse, and the nurse using the intercom system to ask what the problem was, it became clear that:

1. He was now in a lot of pain.

1. The intercom system doesn't work for people who are very hearing impaired. He never heard a single word through the intercom system from the nurse's station, and was reduced to moaning louder and louder until help arrived, in person.

This is the kind of problem that the Department of Justice (DoJ) program called the Barrier-Free Healthcare Initiative is intent on addressing. The DoJ, which oversees compliance with Americans with Disabilities Act (ADA), has committed resources and attention to the important work of providing effective communication for patients with hearing loss in hospitals, pharmacies, rehab facilities, and doctors’ offices.

My home state, Virginia, has jumped on board with this initiative, and passed its own initiative to assist hospitals with ADA compliance. Signed by Governor Terry McAuliffe earlier this year, Chapter 113 reads as follows:

Be it enacted by the General Assembly of Virginia:

That the Department of Health shall (i) work with stakeholders to develop guidelines for hospitals to ensure that hospitals are complying with requirements of the Americans with Disabilities Act and that patients and family members with sensory disabilities are able to communicate effectively with healthcare providers and (ii) report on its progress in developing such guidelines to the General Assembly no later than December 1, 2015.

The bill would not have made it to the floor, much less the printer, had it not been for the efforts of Arva Priola, the outreach coordinator for the deaf and hard of hearing at the disAbility Resource Center in Fredericksburg, Virginia. Priola, who wears cochlear implants, saw the need firsthand from her experience in the recovery room. “I always direct the nurses to mark my cochlear implants so they are put into the correct ears. That’s also true for hearing aids. It allows us to use our hearing sense when we wake up from a procedure,” she says.

Virginia’s initiative is intended to help hospitals comply with the requirements of the ADA. Those requirements include (in layman's terms):

• assessment of each patient's communication needs

• provision of the technology or other assistance (for patients who are deaf, this is often ASL interpreters)

• covering the costs, if any, of providing that assistance

Priola not only saw the need for such an effort by the state but also consulted with agencies and stakeholders, such as the Hearing Loss Association of America's Virginia Chapter, the Virginia School for the Deaf and Blind, Association for Late-Deafened Adults, the Virginia Association for the Deaf, and the Virginia Department for the Deaf and Hard of Hearing (where I serve on the advisory board). She then approached Delegate Robert "Bobby" Orrock (VIrginia House of Delegates) to sponsor the measure. He agreed.

The rest is history. Strong support (unanimous, in fact) was received in both legislative chambers, and the governor signed it in March. The ball is now in the Virginia Department of Health's court, since it is designated as the agency to make it happen (along with the stakeholders and cooperating agencies that will be involved in implementation).

It's a positive note, not only for Virginia and its governing bodies, but for demonstrating what we can do as advocates when we really put our minds, and energies, and focus, to work. And when we have a mover and shaker like Arva Priola.

The DoJ's ADA website is full of information about its national initiative. Click here to see some of its recent actions in enforcing the ADA for communications issues in all healthcare settings, not only hospitals.

Staff writer Kathi Mestayer serves on advisory boards for the Virginia Department for the Deaf and Hard of Hearing and the Greater Richmond, Virginia, chapter of the Hearing Loss Association of America. She writes about the science of how our brains make sense of sound at BeaconReader.com.

Let's Get Looped!

By Yishane Lee

We’re talking about hearing loop systems, of course. As writer Elizabeth Stump describes in “Keeping You in the Loop,” in our new Spring issue of Hearing Health magazine, hearing loop systems deliver clear sound—free from background noise, echo, or distortion—directly into hearing aids that are equipped with telecoils (T-coils). About two-thirds of hearing aids have T-coils, and hearing loop systems are available at a growing number of public venues, ranging from churches and other places of worship to New York City taxis to auditorium ticket booths.

But hearing loop system advocates think we can do better. Here is advice from Juliëtte Sterkens, Au.D., the consumer and hearing loop advocate for the Hearing Loss Association of America (HLAA) and a member of the National HLAA/American Academy of Audiology Hearing Loop Task Force.

What are your recommendations to others on how to advocate successfully for looping systems in their community?

I usually make a phone call or a pay a visit and explain why people with hearing loss (even if they use hearing aids or cochlear implants) have trouble hearing. Most facilities are unaware of the difficulties people with hearing loss experience—it is my experience that they want to help. During the visit I often play parts of sound demos in and out of hearing loops. These sound demos can be eye—or should I say ear—opening?

I have also let some of the responses from hearing loop users help me in the process. Many comments can be found online, such as at LoopWisconsin.com.

Advocating is made easier if I know that a facility will soon be undergoing remodeling because the installation of the loop wire is usually easier and less expensive if completed when the carpeting is going to be replaced anyway.

If cost is going to be of concern, I will offer information as to how other venues have handled this. For example, there are grant monies available for some venues (libraries, some houses of worship), and many communities have a community foundation is interested in knowing what can be done to improve access.  

For example in Oshkosh, Wis., the community foundation was helping to fund a remodel of the Oshkosh Convention Center in the fall of 2008. I made a couple of phone calls and sent a letter with information to the executive director. The result was they helped fund two hearing loops at the convention center about two weeks before the carpeting was to be laid down. 

The executive director believed me when I told her that having a hearing loop at the convention center would convince other venues to do the same. Oshkosh now has more than 40 hearing loops including its 100-plus-year-old Grand Opera House, a funeral home, several retirement communities, a court room, and a new conference center at University of Wisconsin Oshkosh.

To increase attention to a need, I have found that a letter to the editor of a newspaper can be of tremendous help—and the best part is that this is free!

There is strength in numbers: If you are advocating for improved access ask a friend or family member or a hearing professional to write a short letter of support as well.  

The last resort would be playing the ADA card (Americans with Disability Act). The ADA mandates that facilities offer assistive technology. If a facility is unwilling one could file a complaint with the Department of Justice.

The HLAA has more tips to help you advocate for loops in your community, and we have additional links including looped spaces at hhf.org/loops.