THE DEATH OF DEAFNESS?

IS AMERICA POSITIONED TO END DEAFNESS? DO WE WANT TO?

WHAT ARE THE ECONOMICS OF DEAFNESS? WHO WINS?

WHO LOSES? WHY ARE NEWBORNS LEAVING OUR HOSPITALS

WITHOUT $40 HEARING SCREENINGS? WHAT’S WRONG WITH

DEAF EDUCATION? WHAT’S THE REAL TOLL OF SSDI? CAN WE

DELIVER SOUND TO EVERYONE WHO WANTS TO HEAR?

.... AND WHO IS RESPONSIBLE FOR ENDING TOXIC NOISE?

. . . A S E R I E S O F Q U E S T I O N S .

... JOIN THE

DIALOGUE.

S E R I E S 2 0 0 0 :

hat was once merely a

thought, a dream, is now

a reality: We can conquer

deafness. The combination of implant

technology, hearing aids, and strong

parental and government support of

universal newborn hearing screening

can enable nearly every deaf baby

to grow up self-identifying–and

regarded by others–as a hearing

person. Children and adults who lose

their hearing can regain it. Since

ancient times, deafness has been part

of the human condition, but no more.

THE CHALLENGE

As America overcomes deafness,

resources will shift to providing a life-

time of hearing health. While services

for deaf and hard-of-hearing people

will grow in some areas, they will

decline in others.

The challenge for the hearing

health field–the economic sector that

includes physicians and audiologists,

hearing-related charities, consumer

groups, research institutions, medical

device manufacturers, pharmaceutical

companies, insurance companies, and

government agencies–is to combine

resources to achieve this historic med-

ical goal. The country as a whole will

support us and donors will finally

correct the huge gap between annual

giving to basic research in hearing

science (under $10 million per year)

and what is given to other health areas

(over $70 million for blindness).

URGENCY

Not until we declare ourselves will the

public absorb the astonishing fact that

each day babies and adults are need-

lessly consigned to silence. We have a

duty to say loudly and clearly that the

anguish can end.

Here’s how Hear US crystallizes

the staggering toll: One of every

1,000 American newborns is pro-

foundly deaf (11 babies a day) and

needs a cochlear implant. Another

two of 1,000 need hearing aids (22

more babies). The average age when

deafness is detected is 30 months,

well after language, speech, and edu-

cation have been irreversibly harmed.

Today, we are only screening around

35 per cent of all children born in the

US, and so only a few who need hear-

ing aids and cochlear implants are

getting them.

The newborn test costs under $40. It

is a disgrace that all infants are not

screened.

Beyond infancy, 13 of every 1,000

children become partially or totally

deaf by age 17. The harm ranges from

difficulty hearing classroom lectures

to loss of ability to function at work or

school. Undetected ear infections (oti-

tis media) and late-onset genetic caus-

es account for most of these losses.

Sixty more become partially or totally

deaf by age 44, 70 more by age 64, 60

more by age 74, and another 40 by age

80, for a total of 246 of those who live

to 80 years old (50 percent of those

who reach that age).

Paralleling this, over 50 million

Americans suffer tinnitus, about 12 mil-

lion severely enough to seek medical

attention, and about one million of those

cannot function on a day-to-day basis.

The main preventable cause of

deafness and tinnitus after childhood

is wear and tear from toxic noise–sound

levels that wound or kill the nerve

cells in the cochlea.

This is a bleak failure. We have not

ignited awareness that the suffering

can end now.

Hear US

The solution is to lead a cultural

shift–away from assuming that deaf-

ness and lost hearing are inevitable

Hear USHear USLET’S TALK ABOUT

CONQUERING DEAFNESS

by John Wheeler

Hear US, a campaign spearheaded by theDeafness Research Foundation, is galva-nizing this shift. However, the hearinghealth field itself is not addressing theimpending changes.

The whole foundation of hearing health is shifting.Attention and resources are moving from a pre-occupation with deafness toward overcominghearing loss and tinnitus–in every degree andage group.

DEAFNESS HASBEEN PART OFTHE HUMANCONDITION,

BUT NO MORE.

W

and toward ending all deafness–creat-

ing the habits and expectation of life-

long hearing health.

Hear US is mobilizing parents,

industry, and hearing health profes-

sionals to work from four platforms:

1. Detection: Ensure that the hear-

ing of all newborns is screened at

birth and prompt intervention can

be received. Make newborn hearing

screening the standard of care.

2. Prevention: Educate the public

and especially children to practice

lifetime hearing health with regular

audiograms and ear protection

against toxic noise. Advocate for laws

controlling toxic noise, especially

within the federal Environmental

Protection Agency.

3. Intervention: Educate the public

and especially new parents about the

alternatives for restoring lost hearing

and facilitate reimbursement or loans

for hearing devices.

4. Research: Fund the search to

understand how the brain and genes

govern hearing, and find better ways

to overcome all forms of deafness and

ear disorders, including tinnitus.

YEARLONG SERIES

We need a dialogue within our field

on conquering deafness. The ques-

tions include: What would it mean to

conquer deafness? What would busi-

nesses and institutions have to do?

What would be the costs? Who will

pay? How would the market for

implants, hearing aids, and audiology

and otology services grow? What and

how rapid would be the impact on

Gallaudet University and schools and

centers for the deaf? What would hap-

pen to American Sign Language and

the Deaf Culture? What research do

we need? What are the benchmarks of

progress? How useful are current

demographic and epidemiological

data on deafness? How should

America share its success and

resources internationally?

To begin, Hearing Health magazine

and Hear US are partnering to lead

the first exploration of these issues. We

will run a series of articles which exam-

ine the questions as they relate to each

stage of human growth. The first issue

focuses on newborns and infancy.

Subsequent issues address childhood,

teens and young adults, and then mid-

dle age and senior citizens.

As a backbone for discussion, we

will look in depth at the economics,

including current and future costs for

education, intervention, living sup-

port, lost earning potential, market

size, and policies. Accompanying arti-

cles will focus on the human side of

the change, on parents with deaf

babies, research, technology, medical

education, medical insurance, helping

families pay for implants and hearing

aids, and teaching children the habits

of lifetime hearing health. ■

John Wheeler is president and CEO of the Deafness ResearchFoundation, which sponsors Hear US.

Ninety-eight percent of newborns receive screening.

Four thousand babies per year get implants, along

with 2000 more children and teens. The average

age of implantation is nine months and is trending

younger. Another 8,000 newborns are receiving

hearing aids. Over 30,000 adults are receiving

implants, a figure that is also increasing annually.

The annual US market for hearing aids has

quadrupled since 1999 because hearing aids so

enhance hearing, especially for listening to music,

that they are fashionable. Hearing aid “stigma”

is forgotten.

A simple home-based, self-administered audi-

ology exam is used by over 30 million families

each year. The exam uses the Internet and audio

connection to the computer, tripling 1999’s

demand for audiological services, since people

want to confirm the home-test and seek hearing

devices. Because the test uncovers cases where oti-

tis media has gone undiagnosed and is damaging

hearing, the demand for otological services has

nearly doubled since 1999.

The need for speech therapists has doubled

since 1999, spurred by growth in home-tests and

demand for implants. A home-test for otitis media

is available by prescription. Almost all tinnitus can

be suppressed by medical intervention in the

brain’s processing centers, and controls on toxic

noise are slowing the incidence of hearing loss,

tinnitus and hyperacusis.

The Environmental Protection Agency in

Washington, D.C., is issuing its proposed Toxic Noise

Regulations after a period of notice and comment.

They cover point and area sources of toxic noise,

stationary and mobile sources, and all areas outside

the workplace.

Gallaudet University receives Congressional

approval to expand enrollment of non-US students

to 80 percent, in stages, between 2010 and 2020,

so that Gallaudet can serve students from countries

where hearing aids and cochlear implants are not

available to the bulk of the population. This shift

compensates for the declining enrollment of US stu-

dents due to newborn screening and intervention

via hearing aids or implants. The legislation

expands the Washington campus and deploys

faculty and graduates to create campuses in Africa,

Latin America, China, India, and Eastern Europe;

and funds Gallaudet through the World Bank and

the US Agency for International Development.

THE YEAR 2010To stimulate our thinking, imagine America’s hearing health scene in2010. Changes like these are possible, and many will occur:

CHALLENGEHow do we project these changes and

plan for them? Join the dialogue! And, parent, patient, professional,

or businessperson, become an enrolledmember of Hear US to add your voice

to this cause!www.hearinghealth.net 800.535.3323

P A R T 1

O F A Y E A R L O N G S E R I E S

IS AMERICA POSITIONED TO END DEAFNESS? DO WE WANT TO?

WHAT ARE THE ECONOMICS OF DEAFNESS? WHO WINS? WHO LOSES?

WHY ARE NEWBORNS LEAVING OUR HOSPITALS WITHOUT $40 HEARING

SCREENINGS? WHAT’S WRONG WITH DEAF EDUCATION?

WHAT’S THE REAL COST OF UNEMPLOYMENT AMONG DEAF PEOPLE?

WHEN THE HECK WILL THE EPA FINALLY REGULATE TOXIC NOISE?

O V E R T H E Y E A R H E A R I N G H E A L T H W I L L F E A T U R E

M A J O R A R T I C L E S A D D R E S S I N G T H E S E Q U E S T I O N S :

THE DEATH OF DEAFNESS?

... JOIN THE

DIALOGUE.

26 hearing health

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IN LATE FEBRUARY, at the invitation of Jack

Wheeler, CEO of the Deafness Research

Foundation, and Paula Bonillas, editor of Hearing

Health magazine, an eclectic group convened in

Washington, D.C., to begin a dialogue of national scope.

Among the participants were people who are deaf,

hearing, parents of deaf children, advocates, executives,

and publishers. In fact, the lives of most are made up of a

combination of two or more of these roles. All are strongly

committed to understanding the future of hearing and deaf-

ness in America, and agreed to allow readers to “eaves-

drop” on the ensuing dialogue.

Around the table: Joel Barish, Paula Bonillas, Angelica

Lewis-Hale, Karyn Schopmeyer, Lesa Thomas, Jack Wheeler,

John Yeh, and interpreters Laurie Bolster and Harry Zissman.

As a catalyst for the discussion, everyone viewed a clip

from Sound and Fury, a feature film set to hit the big screens

this fall. At the film’s core is a “communication war,” a trip

inside one family’s passionate debate over the use of

cochlear implants in their young children.

The documentary reveals the conflicts surrounding deaf-

ness, conflicts about which members of the gathering are well

aware. As the number of people accessing sound via

cochlear implants climbs, the surgically placed device con-

tinues to fuel powerful emotions within the deaf and hearing-

impaired communities. With its capacity to restore hearing to

those who have lost it and allow those born profoundly deaf

to hear for the first time, the cochlear implant is clearly revo-

lutionary. But the technology is not facing unanimous wel-

come. While many are overjoyed by its promise, others fear

the device has the potential to destroy Deaf Culture.

Sound and Fury features the Artinian family,

focusing on two brothers, one deaf and the

other hearing. Each is married and has a daughter

born with profound deafness. The brother who is deaf has

married a woman with impaired hearing, while the wife of

the other is hearing.

The movie follows both couples as they struggle to

choose the best path for their children and highlights the

emotional clashes as they discuss the benefits and draw-

backs of the device.

Acclaimed at Sundance Film Festival 2000, Sound and

Fury was awarded a Golden Spire at the San Francisco

International Film Festival. The film’s message is so powerful

that even the short clip evoked ideas,

thoughts, and feelings–and triggered

a dynamic exchange

among the dialogue

participants.

THEHEART OF THE MATTER

In the film Sound and Fury,Heather Artinian’s requestfor a cochlear implant turnsher deaf family’s worldupside down.

WHEELER: The impact on the DeafCulture of newborn screening, digitalhearing aids, and cochlear implants isa huge collision between technologyand society. In a few years, the num-ber of kids applying to schools for thedeaf will be in steep decline. So willapplications to Gallaudet University.This is a societal issue. Planning forreallocation of resources and preserv-ing Deaf Culture is a societal obliga-tion–not something for the DeafCulture to face alone.

Film and art are the best mediumfor conveying such an emotion-ladenmessage. When I met Director JoshAronson and Producer Roger Weisberg,I knew they could do it. They wantedto create a movie which portrays theemotions–grief, anger, denial, frustra-tion, hunger–that swirl around thequestion of the collision of technologywith the Deaf Culture

YEH [via interpreter]: The medicineand research community wouldn’t behappy with the film because it is oppo-site their philosophy.

WHEELER: Well, first of all, themovie is created by a person whosetalent is to make engrossing films. Heartistically controls them. What yousee is just a sample, a few scenes. Itgives you the idea of the differentpluses and minuses in the story. Thefull-length 80-minute movie zeroes inon just one or two families and has astoryline.

But the artist’s purpose is not toplease the medical community. It is toexpress a truth, as he sees it. And thetruth all resides in the heart of thismatter, not in the brain of it. It resideswhere there’s pain and hope. It doesnot have to do with the details of tech-nology. The film is a work of art.

THOMAS: I would just say that Ithink it presents both sides. As theperson in my house who has a per-spective of both the hearing and thedeaf community, that’s it. I mean, mydaughter’s biological father had a newbaby three weeks ago and my daugh-ter Katie, who is deaf, said, “Oh, Ihope the baby’s deaf.” And my hus-

band, who is deaf, thought it would beneat if Katie had a deaf sister. Ofcourse, the baby is hearing.

Katie’s stepmom was just shockedthat she would say that. And my hus-band has no children because heknew they would be born hearing. Hedidn’t want hearing children. Hewanted deaf children. I mean, heknew, since he was born hearing, itwasn’t likely that they would be borndeaf. So he opted not to have childrenbecause he wanted them to be thesame as he is.

ZISSMAN: Well, I’m a CODA(Children of Deaf Adults) and I agreewith most of what you said. I think it’s

very accurate. But the point abouthoping a child is deaf, I don’t think myfamily adopted that perspective. Atthe same time, if it happened, well,you know, Deaf Culture, blah, blah,blah. But I would not say they ...

THOMAS: They weren’t disappoint-ed you were hearing?

ZISSMAN: No, no, no. The opposite.They were very happy I was hearing. Ofcourse, the barriers were more prevalent

40, 50, 60 years ago than now. It’s differ-ent. So I agree, that’s a true story aboutthe emotions and the philosophies.

BONILLAS: John, did you want yourchildren to be deaf?

YEH: I suspected that they would bedeaf, because of my wife’s heredity. Herfamily were deaf. I wasn’t surprised, butif my son were born hearing or withanother disability, it would be of con-cern to me. I mean, what do you do?And what are their different needs?

Okay, Jack, I’m still not getting aclear purpose of the videotape.

WHEELER: Are you asking why we

showed it here or why wefunded the movie?

YEH: I’m afraid the film opens a canof worms, something that you drop onsociety, and there’s a problem. Thetechnology today and research improvehearing health and make life better forthe children of the future. The otherside is the bad news, the reduction inthe number of deaf. Of course, theDeaf Culture would be upset at thatpart. That part of it is true. We have to

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“What mark will the American DeafCulture be mak-ing in the U.S. 20years from now, or 40? Becausethere is much to be preserved,much to stay alive and vibrant.”

Jack Wheeler

push. Do we stop the research to keepthe culture going? That’s where thetwo sides are challenging each other;that’s the situation.

WHEELER: Okay. If we keep thisgoing, I think we will be able to answeryour question. First, Josh Aronson,the director who shot this movie,wanted to capture the anguish, thehuman emotional involvement as ofthe year 1998. What’s happening inthese families is an engrossing story.We’re the only hearing and deafnessorganization that provided funding forthis film, but there were other peoplewho believed in this film and put upmoney so this movie could be made.

You just said that you saw that, yes,the Deaf Culture will shrink. The rea-son we’re here today is because thereis a need to name this issue. What willhappen to the Deaf Culture as tech-nology improves? How should societyrespond, in terms of policy?

For example, shouldn’t there be apresidential or congressional commis-sion on the Deaf Culture—on thefuture of the Deaf Culture? Aren’tthere some adjustments that shouldbe made in our society to accommo-date the fact that it will grow smaller?Isn’t there much to be preserved andought to be preserved?

The answer is yes. There are lots ofways at the national level to have anissue formally examined. And thereare questions. What if, 20 years fromnow, the number of U.S. citizensapplying to Gallaudet has shrunk tomaybe 40 applications a year? Or 50?What is the consequence of that? Ifthat’s a possibility, it’s time to plan forwhat to do with the enormousresource represented by Gallaudet.

I’m a layperson. I don’t know thecomplications that would be raised bythis, but it seems to me that the answermust include projecting Gallaudet’scapacities worldwide. There will not bereadily available hearing aids andcochlear implants in the Third World orthe Fourth World. Not going to happen,not even in 20 years. You’re an expertwho advises the president of Gallaudet,but the thought that occurs to me is,well, shouldn’t there be a Gallaudet in

Latin America? In Africa? Shouldn’tthere be one in China?

There is only one Gallaudet. It’s inWashington, D.C. Is there a technicalproblem with that? Is sign language,as taught in the U.S., so different fromwhat might develop in other countriesthat there’s no transferable technolo-gy or knowledge? Are there transfer-able skills or not?

I don’t know, but the world needswhat Gallaudet represents. Theneed, specifically in the U.S., Ibelieve, will decline. Should DeafCulture studies be fostered in majoruniversities? I’m sure there are DeafCulture studies, but why not allocate$100 million a year to Deaf Culturestudies for five years and make surethat’s captured? These are things tothink about now.

YEH: We’re talking often on theGallaudet board and that’s true whatyou said. We’re aware and predict thefuture related with people with hear-ing loss will change. I understand that.Also, the ADA has had a lot of impactat Gallaudet University because everyuniversity must provide access, equalaccess, to opportunities for studentswho need interpreters or wheelchairsor accessibility, and the university hasto accept that responsibility. Many,many good students are going to go touniversities other than Gallaudet.We’re preparing for the reduction ofstudents and trying to find other ways.

You are right, what you’re saying.I’m deaf and I’m excited about thenew technology, but also I am feelinga little scared about what the impactwill be for my future. But the video-tape is a good opportunity for every-one to understand and be aware andprepare for this change.

WHEELER: Why not raise the limiton the number of non-U.S. studentswho come to Gallaudet? Make it 90percent, or have no limit. Right nowthere is a limit–no, there’s not a limit,but Congress would be upset if it gotover 10 or 15 percent.

YEH: That’s where now Gallaudetis changing and being active infundraising because all along, for 100years, Gallaudet University has beenfinancially supported almost 100 per-cent from Congress. Their directiverequires a limit of financial supportfor students of foreign countries. Andthat’s a barrier. But now, Gallaudet ispreparing to be self-supporting andindependent from the federal gov-ernment. We can make that changeof control. We are planning that.

WHEELER: So it’s possible that youwould increase the number of non-U.S. students? That is, people whocome from abroad?

YEH: Yes. Many other countrieshave limited finances. It’s very expen-

28 hearing health

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“With my background in the field of autism, I see a lot of thesimilarity, in terms of the importance ofearly intervention ...”

Angelica Lewis-Hale

sive for Gallaudet University. Forexample, the university averagesmaybe $14,000 per student a year.Foreign students pay almost doublethat amount. In developing countries,it’s very expensive for them to come toGallaudet University.

WHEELER: Karyn, this is a goodtime to go around the table so eachperson can give a one- or two-minutestory so readers will know who we areand why we are here.

SCHOPMEYER: Okay. I’m KarynSchopmeyer. I was interested in gettinginto the nonprofit sector, health-relatedissues. My mother happened upon JackWheeler at a conference, and it turnsout that he was looking for someone tocome into this office in Washington. Itjust worked out perfectly. I was at theright place at the right time. I’ve beenhere for over a year and a half, startingas an administrative assistant and havenow moved up to deputy campaigndirector of our National Campaign forHearing Health.

I’m currently acting as director ofthe campaign while our director is fin-ishing up her maternity leave withbaby twins. Actually, my term with thefoundation will end in just over amonth, as I will leave to pursue a yearof national service with AmeriCorps.I’m planning on doing that on theWest Coast–that’s where I come from.Prior to being with the foundation, Iattended Kenyon College in Ohio,where I studied French. I’ve alwayshad an interest in communication andhealth issues.

WHEELER: I’m Jack Wheeler, presi-dent and CEO of the DeafnessResearch Foundation. My career hasincluded working in several presiden-tial administrations launching charita-ble enterprises. I’ve also had a careerin business.

Long ago, I served in the military.I went to West Point and served inVietnam. I came into this fieldbecause, when the foundation waslooking for a new CEO, two items inmy background were of particularimportance. I chaired the group that

built the Vietnam Veterans Memorial,and later chaired and served as CEOof Mothers Against Drunk Driving.

The reason I wanted to cometoday to talk about these issues is toexplore the impact technology willhave on the Deaf Culture. I believeour country, our society, ought tostart projecting what those changes

will be and come up with creative,long-lasting policy choices that willmake sure that, 100 years from nowor 50 years from now, this countryappreciates the Deaf Culture, knowswhat it is, that sign language is aliveand well, just like French or Latin.It’s important.

That’s only going to happen if westart now. This is a big country with alot of inertia. So right now is not tooearly to start getting Congress andstate governments to think aboutthese issues.

THOMAS: I’m Lesa Thomas. I’mhere primarily as a parent of a childwho is deaf. I come with a background,a degree in communications from TexasA&M University-Corpus Christi. Ihave had a career as a provider ofcaptions and as a certified interpreter.I currently teach in an interpretertraining program. I also have a hus-band who is deaf. Basically, I cometoday with a focus on education–for

parents and the community, as well ason the education of deaf children.

LEWIS-HALE: I’m Angelica Lewis-Hale. I am the vice president of com-munications for the DeafnessResearch Foundation. My backgroundis, initially, in the area of media com-munications. I started in the broad-

casting field working asa producer, but eventuallybecame the director of a com-munity relations and public rela-tions department for an NBC televi-sion station in California. I have alwaysbeen interested in nonprofit organiza-tions and doing mission-related work.

About eight years ago, I had a sonwho was born autistic. That markedthe beginning of my interest in advoca-cy work. Two years later, I had anotherchild who was born autistic. I also hada child with sickle-cell disease.

As a parent, I was in the same boatas any parent who was in the middle ofa crisis trying to figure out whatresources were available to me. I thinkwe all have paths where our past expe-riences come forward to assist us. Mypast experience in the broadcast field,because I was a researcher and pro-ducer, provided skills in researchwhich allowed me to find theresources for my children at an earlyage. So the combination of those two

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“We don’t want to see the deafcommunity destroyed. We prefer

to have a positive move-ment and suggest moreinformation for deaf andhearing parents.”

Joel Barish

things has been a real benefit.Eventually, as a result of my work

advocating for my two children, theattorney who worked with us to get ser-vices for my kids hired me as a parentadvocate. I was living in California atthe time. So we basically advocated

for families throughout the state withthe school systems. We representedfamilies pro bono, and if we won thecase, that would be how we werecompensated.

Now I’m on the East Coast and thecombination of those two, the wholecommunications and media experiencecombined with the advocacy experi-ence, has really come together for mycurrent work. I’m learning quite a bitabout the deaf community. With mybackground with the field of autism, Isee a lot of the similarity, in terms ofthe importance of early intervention–Iwas able to get resources for my kids atthe early age of two, thank goodness.Doctors may not always know thesymptoms. Well, there were timeswhen I would spend like a year tryingto convince people that my childrenneeded to be examined for certain

things. So I’m a real proponent of earlyintervention and early identification.This is a very important issue to me.

BONILLAS: I’m Paula Bonillas fromCorpus Christi and I’m the publisherand editor of Hearing Health magazine.I started it 16 years ago when I realized

that there wasn’t a publi-cation really offering what Ifelt we should provide in termsof information that was unbiasedand as complete as possible.

I started early childhood with ahearing impairment, so my experi-ence with hearing loss has spannedthe spectrum. I grappled with it as ayoung child in school with no supportservices and a mother who was indenial about it, just struggling in asmall town by myself trying to geteducated and keep it a secret. Youknow, I didn’t want anybody to know.It was quite embarrassing.

But by the time I was in collegeand had put a second hearing aid on,it was something I couldn’t deny anylonger. So it just progressed to thepoint where it was getting more andmore difficult for me, even to contin-

ue in the classroom where I was teach-ing junior high math.

This was well before the ADA[Americans with Disabilities Act], so Ihad no protection from my employer.And, in fact, I lied on my employmentforms about my disability. That wasthe only way I could get a job. Duringmy conference periods, in order tocommunicate with my students’ par-ents, I would jump in the car and drive20 minutes to make a phone call frommy amplified phone at home andcome back to the school. I wasn’t evensupposed to be doing that, but whatwere my options? My hearing haddropped so much that I couldn’t usethe telephone except at home.

Then a friend who is in thetelecommunications industry said,“Why don’t you just get one of thoselittle portable telephone amplifiers?” Iwas floored, because all those yearsfrom the time I was 12 years old allthrough school, through college, goingto professionals, not one of them hadtold me anything about this device. Mylife changed on that one conversation.

I gave my resignation that year andborrowed $6,000 from my dad, afterbeing told that I couldn’t qualify for anSBA loan because I “wasn’t handi-capped,” and started the magazine.

A few years later, when the last ofmy hearing came crashing down, Iplunged into the deaf world. I made aterrible deaf person. I’m addicted tosound, love it, except at certain isolat-ed times when I choose not to hear.

The reason I’m here is because Iwas sitting in my office minding my

own business one day and JackWheeler called and offered a chal-lenge, a journalistic challenge. I cameup to Washington, without much of aclue, the first time, why I was here.And came away impassioned withthis program.

YEH: That’s wonderful, inspiring.I’m John Yeh from Potomac,Maryland. I wasn’t born in America; Iwas born in Taiwan. My parents foundthat I was deaf several years later. Itwas very frustrating. My sister is deafalso. In a family of six children, fourare hearing and two are deaf. My par-

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“What will happenin deaf education10 years from nowwhen most parentshave likely opted for thecochlear implant and the num-bers of students going to deafeducation systems diminishes?”

Paula Bonillas

ents got information about America.There were better schools for the deafchildren. So they looked and foundGallaudet University. I moved herewhen I was 15 years old and went intoGallaudet.

Gallaudet offers a program for

infancy all the way up to Ph.D. level.My sister and I went into the highschool system and then got a wonderfuleducation from Gallaudet University. Igraduated there.

I was ready for the outside world,to get a job. But I was shocked when Iwent out into the world and found itwas tough to find a job. There was abarrier for opportunities–I was upset.I looked at my older brothers who hadbeen successful at the university withM.A.s or Ph.D.s in the sciences andcomputers, but not me. I decided tofollow them and go to the Universityof Maryland to complete my degree incomputer science. But even with anM.A. in computer science, I couldn’tfind a job. I decided that hearing peo-ple just didn’t understand people whoare deaf, that they can work and makecontributions to a company.

Computer science was very new at

that time. I worked for GallaudetUniversity as a computer programmerfor the Demographic Studies andResearch Office. I learned a lot aboutdeaf needs and their situation.

I was still frustrated in findingopportunities for myself, professionalopportunities. I wanted to set up myown company. And I applied and gotfinances from SBA and they werevery helpful.

I wasn’t expecting the company todo big things. I was expecting smallthings, to provide and support specificsmall services for small businesses orindividuals. We hired hearing and deafand we also fired hearing and deaf. Itmakes no difference. I wanted it to besuccessful and grow. I managed as theCEO and chairperson of that compa-ny and it grew. It gave me a lot ofexperience and gave me growth.

In the mid-’90s, business changed.

Re-engineering, downsizing. By then,my company was mid-sized withmaybe 500 employees. The businessgrowth became threatening because

we were in between large and small.And the competition.

We found a company to buy ours.They didn’t want me there. Theybought me out–kicked me out. Ibecame unemployed three years ago. Ienjoyed myself and my life and thechange, but I realized I’m not ready tobecome retired. I don’t know whatretirement means.

And I felt I wanted to do some-thing because I am deaf and under-stand a lot of deaf and hard-of-hear-ing people who are confronted withfrustration in their jobs and withopportunities. I have my three chil-dren, are all disabled. One has DownSyndrome; two are deaf. And so therewas an understanding.

After we sold the company, webegan looking at my next challenge. Ifound that not only in America, butthroughout the world, there’s frustra-tion and a lack of information beingoffered. I live in Washington, D.C.,and it’s a wonderful town for informa-tion, but another few miles away,maybe in Baltimore, they never heardabout the things. Communicationseems weak and poor.

Now I’m interestedin being involved in doing

and seeing the possibilities ofbecoming a powerful information

center throughout the country. I’m thechairperson of WebbyNation andinvested to help start it and work togrow the company so my interest andideas would continue. All along it’sbeen developing, but hasn’t arrived tothe vision yet. Of course, I’m deaf andI understand that the first step is toaccess the deaf and hard-of-hearingcommunities.

Paula mentioned to me aboutthis organization, Deafness ResearchFoundation, and then Jack e-mailedme and made me motivated andexcited because I believe in this andwe have the common idea. It makessense for me to participate and workand push. It is exciting to work withyou all.

BARISH [via interpreter]: I’m JoelBarish, CEO of WebbyNation. I grad-

uated from Gallaudet University in

‘92 in TV, film, and photography.

After I graduated, I’m thinking, well,

what to do? I decided I wanted to be

my own boss, so I set up a travel

agency business and merged with a

speciality coffee shop like Starbucks.

And I had that for three years and

enjoyed the business and realized thelandlord didn’t improve their building.

I moved to American Express inWashington, D.C., and worked for

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that I was coming here and one ofthem was incensed that Iwould have anything todo with this at all, because

of its terms and the label.”Lesa Thomas

deaf clients for about two years. But Isaw that the corporation didn’t giveback to the deaf community. I saw thatno one supported my vision to supportthat community, to give back andexchange. I decided to quit. My broth-er called and we discussed joining anInternet company. We had heard theInternet was hot and we set up a DeafAmerica Internet network.

I saw John and hewas interested in partic-ipating in the business.In one year, after expan-sion, the one thing wewere missing was news.We heard the possibilityof merging withDeafNation [a monthlynewspaper] as a net-work Internet to gettwo. One plus one intoone unit, to get togeth-er. We merged andmoved to Maryland.And now we are addingnew employees andopportunities for a thirddivision, Webbynet, fordeaf and hearing.

We don’t want tosee the deaf communitydestroyed. We prefer tohave a positive move-ment and suggest moreinformation for deaf and hear-ing parents. What can we have?What resources, services, schools,education, hearing aids, the wholespectrum, positive and negative,offered to parents so that they canmake good choices. I’m very excitedto be part of that.

YEH: Earlier you (Jack) were talk-ing about your vision and how andwhere to start. Getting it together, allthis information, into one stop. Thatmakes sense. There’s a lot that needs tobe researched and explored. I feel thisis very important, and still, today, it’swonderful high technology in America,but still weak in information beingavailable to deaf and hard-of-hearing.Hearing information is still weak.

About 95 or 96 percent of deafpeople are living in hearing families,

maybe 96, 97 percent. There’s frustra-tion every day–today, tomorrow, andin the future. My feeling is this organi-zation could be a leader in setting upand giving out information.

THOMAS: I would also say that oneof the things that DRF could do is toleap the gap between people who haveone viewpoint compared to the other

viewpoint. It could be a connection.Instead of a dividing line, it could be aconnection, if you provided informa-tion to both groups.

As you saw on the videotape,there’s a very strong line: You need tobe hearing or you need to be deaf. Ithink you could make it benefit bothcommunities; you could link it togeth-er. That would take a lot of work.There’s been a solid line drawn in thesand for a long time.

WHEELER: Lesa, what are the topthree or four things that you’d likeparents to know, parents who havejust learned their baby is deaf? Thebaby is two days old; they’re youngparents. What would you like themto know?

THOMAS: First and foremost, theyneed counseling. They need grief

counseling. They need the ability tounderstand what they’re dealing with.You cannot learn anything if you’regrieving. You need an understandingcommunity and people who are ableto counsel them with the grief.

Secondly, they need non-biasedinformation about all their options,including technology, cochlearimplants, hearing aids–and the deaf

community. They need accessto as much information as theycan possibly handle. They needto meet people who are suc-cessful, people who have hadsuccessful cochlear implants,others who are successful with-out it, successful signers ... allthis would help parents makegood decisions.

WHEELER: What was it likefor you, trying to find out infor-mation when you learned–howdid you learn your baby wasdifferent? What happened?

THOMAS: First of all, it’s avery odd story. I was learningsign language before Katie’sbirth, but for no reason. I did-n’t have a deaf family member,didn’t know anybody who wasdeaf. I didn’t really even wantto go to the class, and failed the

sign class because I was not motivated.[Laughter.]

It’s true. I didn’t pass.On Memorial Day, my daughter

was born. And 20 minutes after herbirth, the pediatrician came in andsaid, “Wow, you have your handsfull. You have the loudest baby inthe nursery.”

Sure enough, I did, but I didn’tknow why.

Three months later, Katie was sit-ting in her little carrier next to a doorthat slammed loudly and she nevermoved. She didn’t startle, didn’t doanything. I knew immediately therewas something wrong.

Nobody believed me. When I saidthere was something wrong with herhearing, I was told I was a paranoidmom, that I was a brand-new mom,that there was no way I would know

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“My experience in the DeafCulture is that deaf peopledon't want to eliminatedeafness–they want toeliminate the barriers tofull accessibility, withoutimproving your hearing,per se.“ Harry Zissman

that. The pediatrician said, “Oh,Katie’s just stubborn.”

Nobody understood. Nobody saidyes. But when they finally did (whenKatie was seven months old), I felt sadbecause I felt like I had, like, done itmyself. So I felt guilty.

At a year old, she had hearing aids.Nobody told me about the deaf com-munity. They just said put these hear-ing aids on her, so I did. But I was alsoteaching her sign because I alreadyknew some sign. I wasn’t proficient, butI could say bird and milk and cookie

and please and thank you kind of things.The frustration for me was the lack

of information. And then when I gotit, it was either “she needs surgery” or“don’t ever give her any surgery.”That’s bad.

So there were two sides: eitherpositive or negative. And, usually, itwas all negative. If you were on theside wanting her to be hearing, it wasnegative if you made her deaf. In thedeaf community, if you made herhearing, it was negative as well. So, asa parent, you’re walking this line.

The battle with hearing aids, theexpense, the cost. I was at this point asingle mom. I had no education, nojob. What do you do? I was still learn-ing sign. Luckily, I met my currenthusband, who is deaf and providedaccess to the deaf community.

The medical community wascold. They weren’t understanding ofmy needs at all. I find that the educa-tion system is pitiful. I worked as anaid in the classroom until I got mydegree, then I started working withthe kids. I taught hearing kids in highschool. And this whole time, I wasthinking, “What’s the future forKatie?” I never thought about hertalking. I thought about her reading,writing, more than anything.

I didn’t want her to be hearing. Iwas just dealing with how to get hereducated because she was very bright.

The education system was a hugefrustration. I wanted her educated likethe hearing kids. I wanted her to haveoptions, to go to college, to be intelli-gent. Really, I just wanted her to beable to do whatever she wanted to do.To tell me that my child will grow up

with a fourth-grade reading level,which is the average level for gradu-ates of most deaf education programs,was not good enough.

So we started a court battle to getKatie mainstreamed. I found hearingpeople’s prejudice against deaf peo-ple and their stereotypical labelingfrightening. That’s what limits her themost, people’s ideas of what she can-not do.

Nearly five years in court. Nobodytaught me how to fight those battles. Ihad to learn it myself. If I were stilldealing with the grief, I would neverbe able to handle the legal issues. Butit was worth it, because Katie’s suc-cessful in school. She speaks and signsvery clearly, and she wears hearingaids that glow in the dark. She’s proudof her deafness.

WHEELER: Can she sing?

THOMAS: Yes. She placed first in asolo competition last Saturday.

WHEELER: How did you get moneyfor her hearing aids?

THOMAS: The first hearing aidswere provided through a state pro-gram, but she threw them out the win-dow going down the freeway becauseshe didn’t want to wear them.

WHEELER: Katie threw them outthe window?

THOMAS: Yeah. She flushed thesecond pair down the toilet, but Igrabbed them before they went down.Still, we had to have them repaired,but that was less expensive. Finally, onthe third pair, I learned that there wasinsurance for hearing aids. Each pro-gressive pair has been through theinsurance replacing the ones that arelost, broken, or stolen.

BARISH: The hearing aid story isinteresting because, although myfather had hearing aids, I never didgrowing up. Once, when I was maybefive or six, but the hearing aids gaveme a headache and I didn’t wantthem. Then I had severe vertigo.

Last year, we went to a doctor whotold me I could learn to live with thevertigo. I said, “No way. No way.” Sowe tested the instruments for 30 days,and for the first time, they’re not sohard. It’s been a year now and Ihaven’t had one vertigo attack yet.

My insurance company won’t payfor it. I wrote them a letter saying thehearing aid is for medical purpose, nota leisure emphasis. It’s for work.

THOMAS: I have insurance andthey won’t pay for the hearing aidsbecause “they’re not necessary.”

WHEELER: Say that again.

THOMAS: The insurance companytold me they wouldn’t purchase hear-ing aids because they’re unnecessary.

YEH: Jack, you’re hearing Lesa’sstory. It’s a wonderful story. It’s beau-tiful. You sit here and you’re listeningand I’m thinking that millions of peo-ple out there should hear the story.What’s the challenge and how will thestory be disseminated to the people?

WHEELER: To answer your question,John, we’ve founded the NationalCampaign for Hearing Health. We’reinterested in depicting Lesa’s, or any-one’s story, any way we can. We areasking parents to unite with Hear US.Its missions are universal hearingscreening of every baby, and universalreimbursement for two things:cochlear implants and hearing aids.

In America, the very, very poorcan get hearing aids fairly easily. And,of course, the very rich can get them.The middle class goes through hellpaying for hearing aids. We want tocut through the mustard and say,“Look, the hearing aid is a medicaldevice. It’s not like a ring or a piece ofjewelry, and because it’s a medicaldevice, just like hip transplants orwhatever, it ought to be fully reim-bursed, end of story.”

The only reason hearing aidsaren’t reimbursed is because of tradi-tion and the economic interest of theinsurance companies to throw outeverything they possibly can that they

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might have to cover. But society canchange that.

Anyway, the answer, John, is thatright now we are asking parents likeLesa to design the Hear US web siteby sharing the top five things they wishthey had known, those top five thingsthat you would like other parents toknow. It’s a parent-driven and patient-driven site and it’s a parent-driven andpatient-driven organization. It cangrow. It could eventually take on otherissues. But right now and for the fore-seeable future, that’s its mission. Andthis will be a big change in America.

THOMAS: What will you do for folkswho don’t have access to the Internet?There are still a few who don’t.

SCHOPMEYER: We have an 800number, and one of the national pro-

grams we’ve set up is to go to the hos-

pitals. As the trend continues where

more and more children are screened

at birth, we hope the parents will be

given a card to access more informa-

tion if it turns out that their child is

deaf or has a hearing impairment.

Right now, that exists in the form of a

hearing health checklist, which is a

one-page milestone checklist.

THOMAS: Is that the one on theweb page? Is it the same?

SCHOPMEYER: Yes. And that isgoing in nearly three million of the

diaper bags that are distributed to

new parents by different formula

companies.We see it as two things, or three

things, really. One is a reminder to

parents that hearing is something they

should monitor as their child grows.

Two, it sets the stage for parents to be

mindful of their child’s hearing

throughout the child’s life. And three,

it primes the pump for coming back

and doing something much more insti-

tutionalized where parents get some-

thing more useful than just a checklist.

They get a resource booklet when they

leave the hospital after having a child

identified with a hearing loss.In addition to Internet resources,

through media relations, we plan to

plaster the public with the messages of

hearing health, of the need to make sure

that it’s something people are thinking

about. And so we’re trying to get it onto

TV, print media, radio stations, and all

of the other forms of media where

Americans pick up information.

BONILLAS: Lesa, I wanted to goback to something you and I were talk-ing about a few days ago when I toldyou about this campaign. You saidsomething I thought was very interest-ing that I didn’t expect to hear from amother who is hearing. You said, “Idon’t want to get rid of deafness.”

THOMAS: When I told my daugh-ter I was coming here, she was veryupset because the “Death ofDeafness” frightened her. She said, “Idon’t want my deafness to go away. Idon’t want to be hearing.” She loveswho she is. And I don’t want her to behearing either. She is who she is andshe’s successful where she is.

I don’t want to get rid of deafness;I don’t want the culture to go away. Idon’t want the language to go away. Ithink it has a lot to offer.

I told some friends who are deafthat I was coming here and one ofthem was incensed that I would haveanything to do with this at all, becauseof its terms and the label. Reading theweb site or doing anything with it.

My friend is African-Americanand said, “That’s no different than mysaying that the medical communitycan bleach my skin and so why notbleach my skin? Why be the same?”

I don’t want to force people tobecome hearing, nor do I want toforce children to be deaf. It is none ofmy business what the next familydecides. But they should have theinformation to make whatever deci-sion they wish to make.

WHEELER: Does Katie have hearingfriends?

THOMAS: Yes. And she has deaf

friends.

WHEELER: And how old is she now?

THOMAS: Thirteen.

WHEELER: Do her hearing friendssee her as different and special or isshe just Katie? I mean, they can talkto her?

THOMAS: Katie can lipread verywell. She talks well, and she cansign–in English and ESOL. She wastruly brought up bilingual. Katie fitswhere she wants to fit. She does whatshe–it’s very unique. Last Saturdaynight, we had two deaf children andfour hearing kids. They learned to fin-gerspell and sign and communicatewith each other just fine. The stereowas a little loud. ... But her friendscommunicate with her and she com-municates with them. I think herfriends see her as deaf. They also seeher as a 13-year-old. They see her asone of the group.

Katie is completely aware ofcochlear implant technology; if shewants that, it’s her decision. She hasevery right to do whatever it is sheneeds to do to be happy. I just don’tfeel comfortable making that decisionfor her. I don’t feel comfortable mak-ing a life choice for her. Nor do I feelcomfortable making that decision forany other parent or child.

SCHOPMEYER: Joel, you were goingto say something before?

BARISH: Last week, I checked the

web. I noticed the words “eliminatedeafness” and contacted Jack, asking,“Do you plan to remove a communi-ty?” That’s an interesting perspective.

I’m wondering how DeafNation andHearing Health can join your campaignto cross lines of deaf and hard-of-hear-ing plus hearing people who would beinvolved in the deaf community. Wehave specific audiences that could allget together. We don’t want people tolook at this as just medicine. How canmedical, society, and culture allbecome one? It would be hard to mix,like oil and water. I want to see howcan we discuss getting together andbecoming one team to advocate andget information movement, to be moreeffective, to have open discussion.

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WHEELER: Joel, let me answerwhat I think is your question, whichis: Why is there a facet of our oper-ation that talks about overcomingor conquering deafness? From amedical perspective, the biologicalreasons for why a human ear won’tfunction properly is something toovercome. It is very clinical. It doesnot have to do with the culture. It has to do withgoing to medical school andthen spending your lifelooking through micro-scopes, looking at why cellsdo not behave the way theydo when they geneticallyunfold in other humanbeings. That’s what we wantour scientists and physi-cians to do. Society canquestion and process whatcomes out of the medicalcommunity. The puzzle andthe mystery of why peoplecan’t hear is something toconquer.

And when I say, I’m speakingfor myself here, when I say con-quer deafness, I mean, if amother or father want their baby tohear, we will put a sword into theirhand that will conquer it, that willovercome the barrier between themand their child. Now if you are some-one who has grown up in the DeafCulture ...

THOMAS: That sounds a lot likeeugenics.

WHEELER: Why?

THOMAS: Similar thought process.

WHEELER: But who is having thethought process? It’s the mother andfather who can choose for their child.I mean, it’s not a choice that a physi-cian makes. This is something I had tolearn when I came into this position, isto think the way doctors do. Doctorswant to empower parents. Witheugenics we’re talking about decisionsmade by ...

THOMAS: By someone else.

WHEELER: By guys like AdolphHitler or some political structure. No,no, no, no. The medical point of viewis to empower parents.

THOMAS: The reason I broughtthat up is because Alexander Graham

Bell had the idea of eliminating deaf-

ness by not allowing people who were

deaf to marry and to repro-duce. Martha’s Vineyard was a

huge study and research area for him.

Some of these things were already

said by Bell; it sounds similar.

Although it’s a different perspective

on your part, if you read the words,

they sound similar. Especially from

the perspective of the deaf communi-

ty, which knows about Alexander

Graham Bell.

WHEELER: Well, first of all, that’sone reason why you’re here. The pur-pose of Hear US is to be patient-dri-ven and parent-driven. DRF disclosesthe information we uncover. We arewholly dedicated to understandingeverything that has to do with hearingand the vestibular system.

BARISH: I thought of how the doc-tors approach the grief, yes, they havea solution, the cochlear implant.Hopefully we’ll see DeafNation asneutral, not the medical perspective.We have two different sides, the med-ical perspective and how you canimprove your hearing and DeafCulture. How can we become one—link them together? We have a per-

spective on how to do that now so doc-tors and the patients can feel, “Oh,okay, I’m being given different optionsinstead of giving the first impressionas a medical perspective. I want themto feel a relationship with the doctor.”

THOMAS: That means the physi-cian would have to have the cultural

perspective as well. And that’s some-thing that I felt was missing the entiretime, was that I got no Deaf Culturefrom anybody. I didn’t get that.

BARISH: That’s normal to feeling,okay, the deaf world exists and theDeaf Culture, it’s okay.

THOMAS: So I know it’s difficultfor the doctors to look at something ...

SCHOPMEYER: We have built in amedical professional education com-ponent to the campaign where wehope to work with pediatricians andthe primary care physicians who don’tknow. I mean we’re talking aboutcommunity practitioners, not neces-sarily the academic physicians. But thecommunity practitioners have neverseen a child with hearing impairmentbefore. That’s something we’re build-ing into the campaign and I could seewhat we do, what comes out of thisroom today being beneficial to thatportion of what we’re doing.

THOMAS: It’s important that par-ents not get just one bit of information,just one parent’s story, but several with

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“We have to face this. Justin the last five years, thenext five to 50 years, lookat what's going to happen.”

John Yeh

different endings, different outcomes,different perspectives. Options.

LEWIS-HALE: She brings up some-thing interesting, the whole educa-tional aspect. That’s a whole ball ofwax that a lot of parents are going tocome up against as well.

THOMAS: Even when a child has acochlear implant or hearing aids, aneducator doesn’t know how to dealwith that. Katie’s got a good sense ofhumor, but it doesn’t matter how longshe’s been in a school and how manytimes we visited, there are still thoseinstances where educators don’t knowwhat to do.

LEWIS-HALE: To the point wherethey will exclude you out of a class-room just because they are afraid ofhow they can, how they are going todo things.

THOMAS: It’s a struggle. In theeducation system, people are notaccepting, even if you have a cochlearimplant. They are going to go, “Whatis that thing on your head?”

BONILLAS: Well, even now in theclassroom, many kids with the bestcochlear implants still need adaptiveequipment or extra services. So there’s

a whole other realm of the educationaspect that hasn’t even beenaddressed. We’re moving towardacoustic standards in classes for hard-of-hearing children.

One thing, though, I keep wonder-ing about is what will happen in deafeducation 10 years from now whenmost parents have likely opted for thecochlear implant and the numbers ofstudents going to deaf education sys-tems will be diminished. It will bemore and more difficult for the statesto justify continued financial supportof schools that don’t house very manystudents. What happens then?

THOMAS: We don’t have enoughbeds for all the kids we have at theTexas School for the Deaf. We’re notjust getting deaf students; there are alot of other disability types. Thereare also schools that recommendthat students with behavioral prob-

lems or whatever attendTSD. We just expanded thecampus and we’re already out ofbeds at the dorms.

YEH: Gallaudet University has sta-

tistics that show that the numbers ofdeaf children are reducing.

THOMAS: What happens often is

that maybe they’ll go to a publicschool, a regional day school program,and they don’t get a very good educa-tion or they have problems. Themajority of the students are at highschool age when they go to a schoolfor the deaf. Most of the students stayat home, in Texas anyway. And then asthey get closer to high school age, likemy daughter right now. All this timeshe didn’t want to go. Now she wantsto go for the connection, the deaf con-nection. She wants the culture and thefeeling of similarity.

BARISH: In Maryland, they have150 students at the state school. Mywife teaches there; she joined lastSeptember. The superintendentwarned her that 130 out of 150 havedeaf parents. Wow, that was a big chal-lenge, a large percentage. Studentsleave other states to move toMaryland because they want to beunder the deaf school. So I have sym-pathy for other schools.

YEH: Jack, are you catching whathe’s saying? A lot of parents who aredeaf are sensitive about having theirchildren go to a school for the deafwhere they can be around other chil-dren who are like themselves. Deafchildren whose parents are hearingend up in mainstream schools more.Parents want their children to be likethem. And so hearing parents havetheir deaf children go to mainstreamschools to be with their own culturelike themselves. It’s a difference in thecultural perspective.

SCHOPMEYER: I have a questionfor Joel, John, and Lesa. What kindsof articles or issues do you feel thepeople in the deaf community wouldbe interested in seeing and reading?What topics should we be thinkingabout? We’ve talked a lot about par-ents and children and providing edu-cational opportunities. We’d like yourinput on defining issues.

ZISSMAN: Excuse me, I under-stand my role here is a little bit fuzzy.But I am a CODA and I do have a per-spective on these topics. I don’t know

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“We plan to plaster the public with the messages of hearing

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Karyn Schopmeyer

what participation you want fromCODAs in your studies or research,but of course I would encourage it.

I want to support what Lesa saidabout questioning your wording andhow you use the deaf people and cul-ture; they don’t want to eliminatedeafness. My experiences in the DeafCulture is that deaf people don’t wantto eliminate deafness–they want toeliminate the barriers to full accessi-bility, without improving your hearing,per se.

My grandmother died 38 yearsago, that’s before captioning, beforealerting systems. Before relay services.So I wanted to just put some empha-sis, no, we don’t want to eliminatedeafness. Sure, many people wouldtake the “hearing pill.” John himselfhas said that.

Yeah, you know, the idea of hear-ing, wow, it’s exciting. But I think theemphasis is they don’t want to elimi-nate deafness; they want to eliminatethe barriers to full accessibility. Andso maybe that answers your question.

What kinds of articles do people inthe deaf culture want to see? Articlesrelating to those barriers which arestill there. They don’t want to hearnecessarily. Some would, but you justwant the best technology. My perspec-tive, as the one hearing person in myfamily, is that those barriers must beremoved. And they are being removed.I remember the struggles beforeTTYs, before captioning. Deliveringinformation is obviously very key. Theadvocacy, the technology, and themedical field also.

SCHOPMEYER: Joel and John, doyou think the deaf community is sickof hearing about cochlear implants?Do you get tired of the articles, of thesuccess stories? Are you oversaturatedor not at all?

YEH: I’d like an implant, but I’mstill a little scared about it. I’m waitingto see what further technologicalimprovements can happen. I don’tknow about right now. They seem tobe really big right now. I’m waiting tillthey get microscopic. Informationabout implants should be published.

WHEELER: Let’s do some math.Let’s say five percent of deaf babiesare born to deaf parents. It might bethree percent and it might be six, butlet’s say five. That means 600 of the12,000 deaf babies born annually inthe U.S. have deaf parents. How manyof those deaf parents, over the next 10years, are likely to choose hearing aidsor cochlear implants for their child?

Some of them will and some ofthem won’t. Let’s say every year 200.That means 400 are going to grow upin the Deaf Culture.

The assumption is that virtually allof the 95 percent of the hearing par-ents of deaf babies are opting forhearing aids or cochlear implants.Now because of the ADA, Harvardand Yale and Princeton are going tolook on having a student who is reallybright and also profoundly deaf assomebody they’d like to have fordiversity so they won’t get sued. Howmany of that 400 will get snapped upby other schools. 200? 100? Is anannual flow of 300 kids enough to sus-tain Gallaudet? Are all of those 300going to reach intellectual, academicachievement that meets Gallaudet’sstandards? No, I don’t think so. Sowe’re talking 50 or 100, pick a number.We’re in the realm of 100 per year forGallaudet, 10 years, 17 years fromnow. Where am I wrong in this?

YEH: No, I think you’re right. Whatyou’re saying makes sense. Five yearsago, selected research on deaf chil-dren in elementary schools indicatedthat one out of eight children had acochlear implant. That was five yearsago. This figure has increased to aboutthree or four out of eight children whoare being implanted. That’s going tobe happening. That’s the increase injust five years. And I think that if thosestatistics are true, we’re going to see inthe next five or 10 years anothertremendous change and an expansionin how many children have implants.

WHEELER: This is going to happen.Or, let’s look at it this way. This is like-ly enough to happen that it is not goodstewardship to not prepare for it.What do we do with those resources,

the human resources, the intellectualand pedagogical accomplishments,what do we do with them? What istransferable to a Gallaudet in LatinAmerica? Is the answer zero? I justdon’t believe that.

If US AID and the World Bankgave $30 million a year to Gallaudetfor five years and said, “Figure outhow to create a Universidad Gallaudetin Argentina,” you guys could figure itout. And you could do the same inRussia. That business of coming upwith a common sign language is with-in the wit of Gallaudet’s expertise toovercome.

THOMAS: In Corpus Christi, in theregional day school program, maybeabout half of the students havecochlear implants, but they still attenda regional day school program. Theyare still not in the mainstream, partlybecause parents are not doing thework at home. Having the implantdoesn’t make you hearing. It makesyou hearing if you do all the work, Iguess. But it doesn’t make you hear-ing—just boom. A lot of parents aremisinformed and they don’t work withtheir children. Their numbers havenot diminished at all, even with theinflux of cochlear implants.

WHEELER: Well, here is the issue:What you’re saying is true and it isbased on a population of childrenwho received a cochlear implant atwhat age?

THOMAS: I’m speaking of a kinder-garten class. So we’re talking threeand four year olds.

WHEELER: Okay. Children inGermany are getting implants as earlyas five months. I’m not a doctor and sowhat I’m saying is just my opinion. ButI’m not thrown out of conventionswhen I express it. I mean it passes asaliva test. You should prepare for hav-ing children on average gettingcochlear implants at 18 months orunder in the U.S. Maybe even as low as12 months. Someday, if we have a total-ly implantable cochlear implant, whichmeans we don’t need the thickness of

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skull necessary for the microphone, itcould go the same as hearing aids. Itcould go into a baby at two months.

The earlier the baby’s brain wakesup and says, “Hey, this is audio data,I’m going to be an audio brain,” thenthe less habilitation that baby needs.So again, I’m coming back to my ques-tion: How likely does this scenariohave to be for it to be a requirement ofgood stewardship to plan for it as acontingency?

Good stewardship says we mustprepare for it as a society. What markwill the American Deaf Culture bemaking in the U.S. 20 years from now,or 40? Because there is much to be pre-served, much to stay alive and vibrant.

I know I sound like a broken recordon this. I think there’s much thatGallaudet can give to the rest of theworld and that US AID and the WorldBank should be footing the bill for it tothe tune of well over $10 million a year,starting real soon. If I were running theplace, that’s what I would do. Get a bigfat grant doing that in a nanosecond.

BARISH: Many friends out of thecountry come to Gallaudet and decideto stay in America–99 percent stayhere because of the good opportuni-ties here. They don’t want to go backto their country; they stay in America.

WHEELER: Well, that means youwant Congress to go along with havingas many non-U.S. students as possible.And then to take on the problem ofhow you get those students to givesomething back to their country. Thereare other government organizations,federal outfits that have to deal withthat problem. But I think it’s within thewit of good administrators to solve that.

YEH: It’s a very interesting thought.A huge challenge. And I think you’reright. We have to face this. Just in thelast five years, the next five to 50 years,look at what’s going to happen.

WHEELER: The way to makeAmericans get up and salute somethingis to think very big. And to think in

terms of being generous to the rest ofthe world. American leaders like to thinkthat way. And the idea that Gallaudet ismoving from being an American trea-sure to a world treasure can knock downa bunch of millions of dollars forGallaudet. I really believe that.

In any event, I don’t want to gethung up just on one idea. I do believethat creatively thinking about whatcould happen will mean that 50 yearsfrom now the legacy and the presence,that is, the presence in the year 2050of the American Deaf Culture, will bevibrant and have evolved in ways wecan’t guess. These guys in Santa’sworkshop are very, very busy makingcochlear implants smaller and smallerand better and better.

I wonder if we could have a lastword or a question or something that’sbothering people or a contributionthey would like to make. Or somebodythat we’ve forgotten. Paula, is theresomething you would like to tell par-ents who have just learned their babyis deaf? Is there something you wouldlike to tell an adult your age, whonever got a cochlear implant and nowwishes they could get one? Who havewe forgotten and who should wespeak to? Or what has been said thatought to be corrected?

BONILLAS: The biggest concernfor most of us is what do we do withthe new deaf babies–their parentsmust be provided with unbiasedoptions. There is no quick fix thatworks for everyone.

When a person my age faces deaf-ness, especially sudden deafness, itcan be very devastating, even whenyou are anticipating it. When you fallout of the world of sound and sud-denly it is no longer available to you,it is like you become completely iso-lated. It’s very important at thatmoment in time to have quick accessto people who understand it, to theprofessionals who know how to treatit. To know their options.

People get suicidal over suddendeafness. People get suicidal overMeniere’s, over vertigo, over a lot ofthose ailments that too often aren’treally taken that seriously by the med-

38 hearing health

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ical community. Hearing loss and deaf-ness do not get as much attention orcredibility as other disabilities. What’simportant, I think, is ready access tounbiased information.

YEH: All of our organizations are

talking about the need for informa-tion, the need for support for services,the need for dealing with barriers, butthe finances haven’t necessarily beenavailable. So is there any way that youcan help generate some of this finan-cial support so that some of thesethings can happen? Can you talk a lit-tle bit about the financial arena?What’s your vision?

WHEELER: In order to raise moneyas a charity in America you need toget people’s attention. And you haveto be trendy and you have to have agood picture for television. You haveto be able to touch the heart or be ableto touch the right side of the brainvery powerfully. Like a pair of parentswho are holding their little baby–whothey’ve just learned is deaf. Theirplight is gripping, it’s urgent.

And then coupled with the fact

that there’s a clock ticking whichbegins marking irreparable harm tolanguage development sometimearound six months, if not before. Nowthat’s something that we can use, thatis something that parents can use inorder to get America to pay attention.

That means that we need to find

leaders who are willing to unite par-ents and patients for their cause. Andas best we can define it, their cause isuniversal screening, because they wantto know if their baby is deaf becausetime is so critical.

They want universal reimburse-

ment for hearing aids, which is revolu-tionary in this country, as well as uni-versal reimbursement for cochlearimplants, which I believe is inevitable.It’s just going to take a fight.

That’s why parents need to unite.They are like strong horses in har-ness—they will pull the wagon thatbrings in funding for other informa-tion of a kind you’re talking about. Wemust find a driver. We have to find theplace where there is energy to get

America to pay attention to this andto get funders to say, “Oh my God!”

The story they have to present isLesa’s story, Paula’s story, or yourstory. If foundation executives are alsohearing about it in the movie theaterand on Good Morning America, nowwe have people willing to contributemoney.

So the short answer to your ques-tion is really across the table from you.It’s Lesa. It’s parents who have trav-elled this road and don’t want otherparents to go through it. That’s thelead. That’s how we open up, That’show we kind of slap the rump of thisbig inertia-bound country and get itmoving down the road. This will hap-pen. It just won’t happen fast enoughfor us, but it will happen fast the wayAmerica keeps track of things. It willhappen within five years.

YEH: All I can do is applaud yourthoughts and what you’re saying. Sothis is a step. Next question: What dowe do? What can we do in support ofyour work?

WHEELER: Well, old guys like you

and me, we have to look around forreally bright, intelligent youngsters.They get the idea and they’re very goodat it and they’re very creative. Just givethem some time to do their job.

To answer your question aboutwhat can we do together, we just needto talk some more. We need to link upwebsites, provided I can get someoneon, you know, full-time on our staffwho knows this stuff. But I’d like tounfold a relationship here, and Paulaalready started it. When we print this,we should do it on both websites.

YEH: Yes, yes, we would like to dothat. Let’s overlap. I think that weneed, and I know that we are still miss-ing contact with other groups. Peoplewho are hard- of-hearing, people whoare losing their hearing, so I think thatwe need to all work together in orderto overlap our contacts and our asso-ciations. I know that there are othergroups that need information andpeople need information about DeafCulture. They need to know, and deaf

people need to learn about hard-of-hearing people and cochlear implantsand that whole process.

BONILLAS: Along those lines–work-ing with other organizations–I triedvery hard to have representation fromNAD at this meeting because I see agreat need for cohesiveness in thecommunity. This is an especially sensi-tive stage in the planning for thesechanges. They declined the invitation.

WHEELER: John, Paula’s experiencehas also been our experience here at

DRF. When the National Campaign

for Hearing Health was being born,

which was March of 1999, my senior

staff and I met with NAD. It was a very

cordial meeting, friendly. It went fine.We asked for information from

NAD–that they write out exactly what

they would like parents to know. What

NAD would like parents to know

when they learn their baby is deaf.

Although they agreed to do this, we’re

still waiting. I’m not being accusatory.

I’m saying, we’re still waiting.I said the same thing and got the

same commitment in the same kind of

meeting with Oscar Cohen at the

Lexington School for the Deaf. And

Oscar said, “Yes, you bet, it’s coming,

it’s on it’s way.” We’re still waiting. It’s

not coming.So finally we got to the point

where I said, “Well, let’s find people

who will open up a dialogue and let’s

print it and let’s start. The national

media, I believe, will pick this up. And

that will bring the rest of the Deaf

Culture, you know, around to saying

we must, we have to speak to this.” ■

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54 hearing health

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Anecdotal evidence from the

hearing healthcare field indicates

that the vast majority of new

parents with a deaf baby favor the

choice of technological intervention

which enables their baby to hear.

These children will largely grow up

integrating into the “hearing world.”

If Americans are choosing techn-

ological solutions to assist their

children born with hearing loss,

and we certainly have the tools at

our disposal to do so, then how do

we measure the pace of change?

First, we must closely analyze the

statistics and their reliability. To

start, that means we must establish

a baseline.THE

CHO

ICE

TO H

EAR:

SETTIN

G T

HE B

ASELIN

E

HOW MANY

AMERICANS

ARE DEAF?

THE PROBLEM

For policymakers and executives newto the field, a great frustration hasbeen that there is no reliable figureon how many Americans are deaf. Anexample of the problem is the oldmantra, “28 million Americans sufferfrom hearing loss,” lifted from the1994 National Health Survey of theDepartment of Health and HumanServices. This datum is not very use-ful for policy purposes–we don’tknow how many people really cannothear in either ear. There is no agree-ment in existing policy and analysisreports about the decibel level whichconstitutes deafness or a significantpermanent hearing loss. Plus, we donot know to what extent severe suf-fering from tinnitus is combined intothis figure.

There are several reasons for thisvagueness.

One is that until just the last fewyears, there has been no technology todetect newborns with profound or sig-nificant permanent hearing loss. Infact, it is shocking that our country hasno national health statistics on howmany children three years old oryounger have hearing loss.Consequently, there has been noincentive to establish a baseline formeasuring results in a march to giveparents the power to choose hearingover deafness.

A related reason is that leadershave not thought in terms of nationalprograms to eliminate the two biggestpreventable causes of significant per-manent hearing loss: untreated otitismedia during childhood and damagecaused by accumulated exposures totoxic noise in the environment. That is,in an incredible lapse of nationalhealth policy, authorities protect hear-ing only in the workplace but not inAmericans’ living environment!

A third reason for a lack of baselineinformation is that only now are par-ents, politicians, and business leaders

challenging the field to think in termsof programs of parental choice forhearing and measure progress.DEFINITION OF “DEAF”Use a pure tone average (PTA) ofreadings at 500, 1000, and 2000 Hz.The objective is to estimate the popu-lation who have little or no ability toprocess auditory signals without eitherhearing aids or a cochlear implant.This standard accords with otologicand audiologic practice for measuringseverity of hearing loss, in which a lossof 70 dbA or more defines “severehearing impairment” and a loss of 90dbA or more defines “profound hear-ing impairment.”

A RELIABLE ANSWER

Applying methods of probabilityanalysis to data in studies made by thefederal government, researchersfound that, at a minimum, 464,000Americans are deaf (severe to pro-found hearing impairment in bothears), with the likely probability ofanother 274,000 people with severe toprofound hearing impairment in bothears who did not respond as consis-tently as the first group to the surveyquestions.

Therefore, in addressing issues ofmedical care, special education, andaccommodations, as well as vocationalrehabilitation and labor force partici-pation, this study estimates there are738,000 deaf children and adults.

The researchers also analyzed theirfindings by age, education, familyincome, and labor force participationto lay the groundwork for furtheranalysis of the economic impact ofdeafness on American society.

THE IMPACT ON THE DEAF CULTURE

With technology now available, everybirthing hospital in America could bedetecting the roughly 12,000 babieseach year who are born with profoundor significant permanent hearing loss.Most of the families of these babieswould like them to be able to partici-pate in the hearing world. By makingit easy for these families to choosesuch technological solutions (e.g.,obtaining cochlear implants, hearing

aids, and appropriate medical andintervention services), we can enablethese babies to function in the hearingworld. All members of the hearinghealth field agree that it is imperativethat all babies be tested. Testing andidentifying hearing-impaired babiesearly, combined with parental choiceswhich favor hearing, may cause theDeaf Culture to shrink in number. Asdiscussed in the March/April 2000issue of Hearing Health, this is amajor concern that requires societalstudy and response.

THE SOURCE OF THE DATA

While many have recognized the needfor baseline data, Jeff Greiner, presi-dent and CEO of Advanced BionicsCorporation, resolved to get a studyunderway. In early 1999, AdvancedBionics funded the Project HOPECenter for Health Affairs in Bethesda,Md., to conduct a wholly independentscientific analysis of all available sta-tistical data.

The result is a study entitled “TheSeverely to Profoundly HearingImpaired in the United States:Prevalence and Demographics.”

CHECKING THE STUDY’S CONSISTENCY

The study acknowledges that there isno national data on the number ofbabies who are born severely to pro-foundly hearing-impaired. But it esti-mates that an “understated” figure is,at a minimum, 1 in 2000, and notesstudies in Rhode Island and Texas thatfind the figure could be 2 per 1000 or3 per 1000, respectively.

Separate analysis on data fromstates and clinics nationwide conduct-ed by the National Center for HearingAssessment and Management at UtahState University, under the supervi-sion of Dr. Karl White, estimate thatin every 1000 babies 1 is born withprofound bilateral loss, and 2 moreare born with significant permanenthearing loss (in one or both ears) thatwill impede educational development.Taking the national birth rate of near-ly 4 million per year, this translates to4000 who, according to recentresearch and clinical experience, havesevere enough hearing losses that they

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56 hearing health

would benefit from a cochlear implantand 8000 who would benefit fromsome type of hearing aid. In otherwords, a total of 12,000.

3/1000 x 4,000,000

= 12,000 babies

The Utah State and ProjectHOPE studies are mutually consis-tent, which gives us increased confi-dence in their accuracy. ProjectHOPE yields an estimate of 738,000Americans who are severely to pro-foundly hearing-impaired in bothears. Utah State yields about 4000babies per year with profound per-manent hearing loss in both ears and

8000 with significant permanenthearing loss in one or both ears.

If an average lifetime has beenabout 75 years, and guessing that overthe last 75 years the average numberof babies each year with profound orsignificant permanent hearing loss isless than the current level of 12,000--let’s say it is 10,000 (because the U.S.population has grown in the last 75years)—then the number of severelyand profoundly hearing-impairedwould be at least on the order of 75times 10,000.

This rough 750,000 figure com-pares to 738, 000, showing a consisten-cy in order of magnitude between theUtah State and Project Hope findings.However, we do not know the full eti-ology of the deaf population; we donot know how many become deafafter birth each year. And we do notknow how many of the babies have

significant (vs profound, bilateral)impairments in one or both ears. Butthe two totals show a rough conver-gence in terms of order of magnitude.

FIND THOSE BABIES!

Thanks to Project Hope, we have abenchmark for measuring the nationaltrend over the coming decades. Amajor medical goal of the hearinghealth field is to give parents andpatients the choice of hearing. Thismeans a new definition: People whosehearing is functional only by means ofimplants and hearing aids.

The choices made in the comingyears will create up to 738,000 per-sons who have the option of hearingby means of hearing aids or cochlearimplants. The most urgent taskbefore us is to find every deaf baby atbirth and make it easy for them toobtain the hearing aids, cochlear

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Age Groups

Perc

enta

ge

0

10

5

15

20

25

30

35

40

45

3-17 18-44 45-64 64-79 80+

22.6

8.0

42.0

18.0

22.1

20.0

9.9

27.0

3.4

27.0

Source: U.S. Census Bureau, Population Division, July 1998Project HOPE Center of Health Affairs, August 1999

Deaf = Severely or profoundly hearing impaired in both ears

The Demographics of Deafness

may/june 2000 57

implants, or schooling in sign lan-guage they need.

In May this year, the NationalCampaign for Hearing Healthlaunched a program called “MayBabies” to emphasize the criticalneed for newborn screening so thatthese babies are identified and givenan opportunity to begin life on equalfooting with their hearing peers.

BEYOND THE BASELINEThe establishment of this baselinegives the hearing health field a pointof departure for examining the eco-nomic effects of deafness onAmerica, and the economic effect ofparents’ choices to enable their deafbabies to hear.

Among players in the field–schools for the deaf, hearing health-care professionals, manufacturers–who will gain from the impact ofthese changes? Who would lose?

As the choice for interventionbecomes an accessible reality anddeafness as we know it today is but amemory, how will the public purse beaffected?

And most importantly, how will

the 12,000 children who are identifiedannually fare? ■

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Source: Estimates by Deaf Research FoundationFebruary 2000

The Count

CURRENT (1999) GOAL

Delivered Deaf Delivered DeafFound Device Education Found Device Education

Babies whoneed hearing aids 2,000 1,000 ? 8,000 7,600+ *

Babies who needcochlear implants 1,400 250 ? 4,000 3,800+ *

Total 4,200 1,250 ? 12,000 11,400+ *

*Clinicians guess that in time, over 95% of parents will choose hearing aids or implants.Some will choose ASL or other deaf education along with or instead of the device

THE NATIONAL CAMPAIGN FORHEARING HEALTH1225 I Street, NW, Suite 500Washington, D.C. 20005800-829-5934www.hearinghealth.net

PROJECT HOPE CENTER FOR HEALTH AFFAIRS7500 Old Georgetown Road,Suite 600Bethesda, Maryland 20814-6133301-656-7401Fax 301-654-0629www.projhope.org

RESOURCES

• AT LEAST 464,000 AMERICANS ARE DEAF

• ANOTHER 274,000 AMERICANSLIKELY ARE DEAF

• THE BEST ESTIMATE OF THE NUMBEROF DEAF AMERICANS IS 464,000 + 274,000 = 738,000.

58 hearing health

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NEWBORN HEARING IMPAIRMENT is the number one birth defect

in the U.S., yet according to the National Campaign for Hearing

Health, only 34 percent of America’s newly born infants receive

hearing screenings! Although 12,000 deaf babies are born every

year, fewer than 50 percent of them are considered at high risk

for hearing loss–and most are born to hearing parents. Thus,

their impairment goes undetected by unsuspecting families.

And by the time the loss is found, language, social, and emo-

tional development have been compromised. National statistics

show that overall, hearing-impaired students rank far behind

their hearing peers, demonstrating an average fourth-grade

reading level upon high school graduation.

Shortly before jockey Kent Desormeaux won the May 6

Kentucky Derby, he made a solemn announcement during an

interview with an ABC reporter: He and his wife Sonia had just

learned that their 14-month-old son Jacob was deaf.

Like thousands of other babies born every year in America,

Jacob left the hospital with a hidden disability that could easily

have been identified through an inexpensive hearing test. In

some ways, however, he was one of the lucky ones: Jacob's loss

was detected at 14 months.

Children typically reach the age of 30 months before

hearing loss is detected. By then, they have lost almost three

years of speech and language development–three crucial

years of learning to communicate. Meanwhile, their hearing

peers are absorbing sound and speech and developing lan-

guage. By the age of three, most hearing kids understand

between 500 and 900 words, are asking and responding to

simple questions, and are beginning to use verbs and tense.

Conversely, a two-year-old with impaired hearing without

intervention can have as few as five expressive words, and

receptive language is severely delayed.

Early detection is but one weapon toward overcoming the

tremendous disadvantages of deafness. With the many commu-

nication options available to parents, the task of choosing among

them may seem daunting when they are often simultaneously

working their way through the various stages of grief. However,

parents must act immediately to help their children connect the

dots that become the picture of language–whether oral or

signed. The ability to express themselves and interact within our

society are key to their futures.

In Best Practices in Educational Interpreting, Brenda Chafin

Seal reports that both deaf and hearing children who acquire the

native “tongue” of their parents during early childhood demon-

strate an impressive talent for absorbing language. The most crit-

ical time in language learning is a period in which the order of

language is predictable across all cultures. The acquisition of the

first words or signs from about 18 months of age to the child’s

second year of life is rapidly followed by the acquisition of sim-

ple two- and three-word or sign sentences. Between three and

five years of age, children basically acquire the necessary rules

of grammar and the complexities of discourse that characterize

their parents’ language. Sadly, a large number of deaf children

begin school without a meaningful language base.

Targeting newborn deafness has become a major crusade of

the National Campaign for Hearing Health, which recently

launched “May Babies” to increase the number of newborns test-

ed at birth. Currently, only 34 percent are tested; the campaign

hopes to see a 50 percent increase when they release their inter-

im report this June. Only 27 states presently have legislation or

policy supporting universal newborn hearing screening. As the

May Babies program extends its reach across the nation, follow-

up research will be tracking the progress as the number of

screened infants increases due to enhanced awareness and leg-

islative and policy changes. Hearing Health magazine will be

reporting on these developments.

Meanwhile, Lesa Thomas, who is the mother of a deaf child

herself, has been researching the positive effects of using sign

language with hearing babies and makes a case for using signs,

regardless of hearing ability. Basing her premise on studies that

support the use of sign language for all children, Lesa explores

current theories on the subject.

magine your eight-month-oldtelling you her gums hurt andshe needs medication. Or your

toddler throwing fewer temper tantrums,crying less, and even becoming more“talkative.” These feats are no longerout of reach.

Gesturing or signing with yourbaby can ease the frustration ofcommunicating, lead to higher IQs,and create a stronger bond betweenparent and child. In an article inResearch and Discovery, Marilyn Daniels,assistant professor of speech commu-nication at Penn State, contends thatfor children, sign language might be amore natural communication code thanspoken English.

Many parents of hearing childrenare opting for signs at very early ages.Indeed, in light of the latest from theexperts, why not?

LANGUAGE DEVELOPMENT

“The ability to learn language is innate.Every child born, no matter where, hasthe ability to learn language. In fact,any child at birth has the ability tolearn any language. Ultimately theywill learn to produce the sounds of thegiven language of their culture,” saysDr. Irma Woods, child developmentspecialist and associate professor at DelMar College in Corpus Christi, Texas.

Language is not speech; speech isverbal communication–the productionof sounds. More encompassing thanspeech, language enables people tointeract and share ideas, concepts, andinformation. Facial expressions andhow we use our body when communi-cating convey meanings and becomepart of the language code that isacceptable in any society and culture.

Language begins the instant a child

is born, crying to convey a need.Shortly afterwards, until about twomonths of age, babies begin producing“open sounds,” vowel sounds like “o-o-o-o-o-o.” Thus begins the phonology ofa language. While these sounds areinitially common to children all overthe world, the sounds become differ-entiated as children age.

may/june 2000 59

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SIGNWITH YOUR

BABY

H E A R I N G O R N O T :

By Lesa Thomas, Contributing Editor

I

Timothy Williams signs “Tiger” in hispreschool class.

60 hearing health

Between two and three months,babies begin producing sounds fromthe back of the throat, like the “k” inkite or “g” in goat. Between four andsix months, they start using their lipsto produce sounds like “b” and “p.”

Babbling soon follows. By combiningsounds, babies are now capable of emit-ting continuous repetitions of consonantsand vowels, as with “ba-ba-ba-ba” or“da-da-da.” Naturally parents eagerlyanticipate the day they will hear theirbabies’ first words, and often “interpret”the babble. For example, if the child issimply practicing a “da” combination,some parents will excitedly assumetheir baby is asking for daddy.

The parents begin to shorten thebabble to produce a “protoword” sothe child ultimately will say “dada.”Protowords are first words. If a childuses them consistently in the samecontext, then the words have meanings.As these associations are reinforced,parents will begin to see the emergenceof more words.

Around nine months, children startpurposefully imitating sounds theyhear. During this period, receptivelanguage–the ability to understandand comprehend–develops, followed

by expressive language.At about 12 months, they begin

producing words. Although theymay not correctly articulate words,babies will consistently use a particularword to connect with somethingspecific. Development is so rapidduring this period that two weeksmakes a difference.

What is interesting is that aroundseven to nine months, children beginforming “communicative gestures.”Research from the University of

Chicago indicates that they initiallyform these simple “signs” with littleinput from parents. They areconveying their thoughts in thismethod because they cannot use thespoken word. For example, they wantto be picked up so they put up theirarms, which means, “Pick me up.”They start waving “bye-bye” andunderstand its meaning. They’ll puttheir fingers to their lips, meaning“quiet.” They are using this form oflanguage to convey an understandingof concepts.

Drs. Linda Acredolo and SusanGoodwyn, who wrote Baby Signs,

suggest that when your child shows

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Top: Joseph Garcia teaches Sienna Votrythe sign for “Water.” Left: Jim McBridesigns “Apple” to his son, A.J.

Sienna Votry (three months later than inphoto above) signs “Bath” to her momwith great excitement.

may/june 2000 61

an interest in signing or uses gesturesto communicate, the time is ripe tointroduce signs. Babies develop atunique paces, but usually this isaround seven to nine months.Learning through play seems to workbest. Take advantage of books, songs,and natural gestures to makelearning easier.

As signing makes its way into morehomes, parents are finding that theirbabies are eager to learn and graspthe signs quickly. One mother, LindaRegester, a former special educationteacher, says, “It really jump-startedthe whole language process for us.”By the time her daughter Chelsey wasa year old, she could speak only a fewwords–and signed at least 26. Amonth later, her sign vocabulary hadgrown to more than 50.

Nouns are the first words babiesuse. They are eager to know what“that” is, so it’s critical that parentsname or label things such as hat, bird,flower, broom.

The word “more” tends to be easyfor children to use, too. By addingverbs, adjectives, and adverbs, languageis naturally expanded. (“More grapejuice?”)

Signing is not an instructionalexercise as much as it is a communi-cation exercise. The signs need to bethings the baby will use and under-stand. Drs. Acredolo and Goodwynadvise parents to pick things that yourbaby would want to talk about. For thepurpose of adding vocabulary, makeup signs if you don’t know them.

Dr. Greene, who has a websitedevoted to answering questions forparents (www.drgreene.com), recentlywrote, “Signs don’t have to matchanyone else’s. Each sign is most effectiveif it is natural, simple to perform, andif everyone in the family uses both thespoken word and sign every time.”

Parents should take into accountthings their babies are interested in andthat give them the ability to exert somecontrol over their environment, such asswinging, eating, animals, TV, or theirfavorite storybook character. Naturalexperiences lead to more successfulsigning with children. Conceptual-ization is added with signs like hot,

cold, up, down. The goal is communi-cation, not perfection.

BENEFITS OF SIGNING

Dr. Greene explains that the emotionalmeltdowns frequently seen betweenthe ages of nine and 30 months areoften brought on by the frustration ofnot being able to communicate.(Imagine what this must be like forchildren whose deafness hasn’t beenidentified!) Children are able tocomprehend more than they can

express and have no other way to assertthemselves. Given signing tools, the“terrible twos” are less terrible becausechildren are able to communicate.

During an Internet discussion spon-sored by Berkeley University, “ParentAdvice about Baby Sign Language,”one mother wrote, “I used only a fewof the recommended signs with myfirst son, starting when he was under ayear old, but even that little bit wasgreat. We started with request signslike thumb to mouth with a tilting upmotion for drink/bottle, and fingers ofone hand tapping the opposite palmfor more–which he continued toenthusiastically use even after he usedthe words as well. His frustration wassignificantly reduced because he wasable to communicate at an earlier age.We also used some simple object anddescriptor signs. He’s just over fouryears old now, and teachers oftencomment that he’s very verbal. Don’tknow if I can credit the signing, but it

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Hal Tafe signs “Help” to ask his parents tohelp him push the stroller through the grass.

certainly didn’t hurt him!”Joseph Garcia developed a method

of early communication based onAmerican Sign Language. In his bookSign with Your Baby, Garcia supportsthe idea of signing early with children,maintaining that doing so empowersbabies to express their needs andreduces communication-related stress.In addition to the strongerparent/child bond that typicallyresults, Garcia says that parents whocommunicate with their babies may beless likely to neglect or abuse them.

Acredolo’s research indicates that

signing “literally builds connectionsin the kids’ brains,” and aids withassociating cognitive and physicalabilities like memory, motor, andattention skills. Indeed, studies showthat children who signed at an earlyage actually have an average IQ of114 compared with 102 for othersafter second grade, according to arecent USA Weekend article.Research funded by the NationalInstitutes of Child Health andHuman Development has also docu-mented the advantages of using signs

with preverbal children.Signing children exhibit higher

interest in books, which can lead to alifelong love for reading. ReneeEvetts reports that her sonZachariah, who is a five-year-oldkindergartener, signed the alphabetbefore he understood the writtensymbols. An avid reader, he usesfingerspelling to sound out wordsand often asks for fingerspelling tohelp him with pronunciation.

Steve Kokette, in an essay entitled“Why All Kids Should Be Exposed toSign,” reports that enhanced vocabu-lary most likely accounts for the highreading abilities of children who sign.When kids learn a spoken word inconjunction with its sign, they aremore likely to remember the meaningof the word.

Dr. Woods says that language is a

method of understanding conceptsand we communicate those conceptsin symbols. Spoken words are symbols,written words are symbols, and signsare symbols. The more opportunitieschildren have to attach symbols, thebetter their ability to express and

62 hearing health

1. Each child develops at his/her own rate. There are many variables in every situation, so

don’t compare your child’s abilities with those of others. Don’t show disappointment if your

child chooses not to sign in a particular situation.

2. Choose at least three to five signs each week and add those to your signing repertoire.

There is no basis for the fear that you will overwhelm your child with too many signs.

3. Use signs in your daily life to augment vocal communications. Allow your child to go

through the discovery process and learn to draw on internal resources to associate signs

with things, personal experiences, or needs.

4. Reward your child’s attempts to communicate so that s/he receives love and acceptance

upon making those first attempts to connect with you in sign.

5. Try not to overanticipate and overrespond to your child’s needs. Otherwise, your infant may

seldom have a need-driven opportunity to communicate. Allow a few seconds or moments

for your child to search for and discover internal resources.

5 Tips for Signing with Your BabyJoseph Garcia, author of Sign with Your Baby, lists the most important

things parents should know about signing with their babies.

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understand language, which likelyexplains the better test scores.

SIGNS TO SPEECHWith an emphasis on manual commu-nication, parents are sometimesconcerned that spoken language mightbe delayed. Instead, studies haveshown that signing children’s verballanguage actually progresses fasterthan their non-signing peers. Signingseems to be a bridge to oral communi-cation; children are naturally drawn touse more language, not less. In fact,their first spoken words are usually thewords they had already learned to sign.

As they learn to speak more words,usually between the ages of 24 and 30months, their use of signs fades away.Dr. Woods offers that parents tend tostop communicative gestures becausetheir children are learning to useexpressive language. Natural gestureslike “bye-bye” tend to linger, however.

Signs expand the social interac-tions, abilities, and knowledge basefor children. An article in Science

News asserts that talkative parentsmake kids smarter. According to ToddRisley of the University of Alaska,“The more parents talk with theiryoung children, the more good thingshappen intellectually for those kidslater on.” When signing is added tothe mix, more learning and thus morelanguage is developed.

The Deafness Research Foundationsees only good from the use of signs.President and CEO Jack Wheeler says,"For a hearing baby, signing is a greattool. It's like learning French or Spanishwhile learning English. Even years agobefore all of this research proved theadvantages, I used sign with my infantdaughter; I’m convinced it opened thedoors to communication earlier thanwe might otherwise have seen.”

In addition to assisting speech withpreverbal children, Steve Kokettereports that research shows that signhelps kids with disabilities other thandeafness. “Some kids, especially thosewith Down syndrome, autism, speechimpediments, and other types of

disabilities, are more willing to learnspoken language after learning to signand communicate,” says Kokette.

Signing seems to be a key toopening the door of language earlierfor many children. Given the opportu-nity to communicate more effectively,children are afforded a head start onlanguage development while also expe-

riencing less frustration. And parents,of course, are thrilled at the advantagestheir children gain as they learn newtools to enhance the communicationprocess. Indeed, maybe the terribletwos don’t have to be so terrible. ■

Special thanks to Northlight Communications for providingphotographs from Sign with Your Baby for this feature, as well asour cover. www.sign2me.com

may/june 2000 63

Diane Yee teaches her son, Nicholas, tosign “More” when he wants more food.

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july/august 2000 43

IS AMERICA POSITIONED TO END DEAFNESS? DO WE WANT TO?

WHAT ARE THE ECONOMICS OF DEAFNESS? WHO WINS? WHO LOSES?

WHY ARE NEWBORNS LEAVING OUR HOSPITALS WITHOUT $40 HEARING

SCREENINGS? WHAT’S WRONG WITH DEAF EDUCATION?

WHAT’S THE REAL COST OF UNEMPLOYMENT AMONG DEAF PEOPLE?

WHEN THE HECK WILL THE EPA FINALLY REGULATE TOXIC NOISE?

THIS YEAR HEARING HEALTH IS FEATURING MAJOR ARTICLES

ADDRESSING THESE QUESTIONS:

JOIN THEDIALOGUE!

P A R T 3 O F A Y E A R L O N G S E R I E S

44 hearing health

The Wall of Jericho ... Over the past several

issues of Hearing Health, we have been

examining if and how deafness might

decrease in America. It is our hope that

our society can prepare for transitional

problems and lay a solid foundation for

new generations of deaf and hard-of-

hearing children.

Emerging from our work has been

the realization that all participants in our

field, from industry, researchers, physicians,

and audiologists and speech therapists to

members of the Deaf community, have a

common, unifying interest: the plight of

the family with a deaf newborn. All of us

have information and support that these

families need.

A second realization has become

painfully clear: a reimbursement crisis is

threatening these families. In the words

of National Campaign for Hearing Health

Director Elizabeth Foster, “The financial

barrier is like the Wall of Jericho.”

As a result, the theme of our series

has evolved from uncovering the

trends that affect deaf demographics to

exploring the ways all of us can and

must pull together to help these fami-

lies and their babies.

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july/august 2000 45

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financial crisis is erupting forfamilies of deaf children whoopt for cochlear implants.

Despite proof that our society realizesa 25-to-1 savings with early implanta-tion – and up to 250:1 for infant hearingaids – health care payers are so poorlyreimbursing cochlear implant andhearing aid centers that many are losingmoney or even facing shutdown.Compounding this crisis is the histori-cally low coverage for hearing aids andspeech, language and audiology care.

We are at a “tipping point”where this disturbing trendcould accelerate. Analysis anddocumentation of the problemas well as contacts with policy-makers and opinion leadersshould take place this sum-mer. The National Campaignfor Hearing Health is alreadyat work and is mobilizing itsadvocacy arm, Hear US.

CLINICAL DATA

Surgeons and patients at manyof the approximately 220implant centers in the U.S.have come forward to shedlight on this dire situation.Experts are gathering system-atic numerical data for release this yearbut already confirm their preliminaryfindings: Damage is afoot. Clinics arerecouping between 25 and 75 percentof their actual costs, or $10,000 to$30,000 for the $40,000 expense ofmost cochlear implant procedures.

WHY NOW?

This crisis has been simmering for yearsand is erupting now for two reasons:

First, because we are identifyingdeaf babies sooner due to increasednewborn hearing screening, thedemand for implants and infant hear-ing aids has escalated. And since eachimplant or hearing aid is a net financialdrain for the clinics, the total lossesare growing.

For example, in a center that isunder pressure to increase from 10

implants a year to 100, at a cost of$40,000 each with only 70 percentreimbursement, the annual lossjumps from $120,000 ($40,000 x 30% x 10) to a figure tenfold higher: $1.2 million.

A center can often cover an annualloss of $120,000 with special grants orwith income from other activities. Butthe higher deficit tends to outrun theability to recover and leads adminis-trators to consider shutting downimplant services.

Interviews with surgeons whotogether perform over half of theimplantations each year confirmthis picture.

The second force is time. We mustact quickly for each child before incur-ring irreversible damage to the fulldevelopment of language and speech.Currently in the U.S., the minimum agefor cochlear implants is 18 months (12months in clinical trials), yet researchindicates that intervention should beimplemented by six months in order toachieve normal language development.In Germany babies can be implanted atsix months in some cases.

THE HEARING HEALTH

ECONOMIC SECTOR

Reimbursement for cochlear implantsis a major societal problem. It is

incumbent on all of us in the hearingscience and care field to pull together.Because we are all interconnectedeconomically, this crisis touches allparticipants in the field. For example,success on the reimbursement frontfor cochlear implants in infants isprerequisite to an ensuing effort toachieve reimbursement for hearingaids needed by the 12,000 deaf ornearly deaf babies born annually inthe U.S. (One third of them will needimplants later.)

Another example isresearchers who focus onhair cell regeneration; they,too, have a vested interest inthis issue. A deaf child bornin 2000 who is not implantedby six to 18 months may neverfully develop the languageand speech area in thecerebral cortex. This meansthat when hair cell regenera-tion becomes available, say inthe year 2030, then the now-30-year-old would not benefitfrom regeneration.

Surgeons, audiologists,speech/language therapistsand hospitals are all partof the interconnectedness

involved in cochlear implants.Consequently, each profession has astake in the economic viability ofimplant and hearing aid centers.And each participant in our field hasone overriding focus: the plight of thefamily with a deaf newborn.

Clearly, we are all members ofthe Hearing Health Economic

Sector. This includes everyone frommakers of batteries and computersused in testing devices and hearingaids, through patients and families,to physicians, surgeons, audiolo-gists, speech/language professionals,researchers and university otologydepartments. Also part of thisteam: professional and volunteerdeaf and hard-of-hearing organiza-tions, research funding foundationsand their donors, and government

3/1000 x 4,000,000

= 12,000 babies

A

Of the 4,000,000 babies born annually in the U.S., 12,000 have somedegree of hearing loss. Are we prepared to help them?

CRISIS IN REIMBURSEMENTPULLING TOGETHER BY JOHN WHEELER

46 hearing health

agencies such as the NationalInstitute on Deafness and otherCommunication Disorders.

PULLING TOGETHEREach of us has a pocketbook interestin relieving the plight of the deaf childand his/her family. More importantly,we each have a societal duty to cometo the aid of the family because that isour expertise, calling and reason forbeing. Following are some practicalguidelines for mobilizing our com-bined efforts:

1. Master the facts of the complexinterplay of providers, items andservices covered, and locale (50states plus territories and federal).Reimbursement policies are literallyall over the map.

2. Pinpoint the top three to fiveareas of maximum payoff and concen-trate on those first. Preliminarily, itappears that these may include:Medicare rate-setting because private

insurers often follow the Medicareexample, Medicaid in several primarystates, meeting with leaders in theHMO and payment community, andworking with congressional and execu-tive branch members to identify preciseregulatory and legislative wording.

A key problem in this cause isthat the huge savings from implantsand hearing aids accrue to society asa whole, but the up-front cost restson health care payers, so the payershave little incentive to reimburse.This creates the classic case for legislative

and executive branch action – the

proven way to champion the needs of

society as a whole.

3. End immediately, through edu-cation, the wasteful and uninformedarguments that still crop up againstimplants, notably that implants are“hearing aids” – and that hearing aidsare not medical devices!

Infant hearing aids – both surgically

implanted and non-implanted – are

medical devices. For 12,000 newborns a

year they are essential to development of

language and speech.

4. Meet at board member andtop executive levels to address thishumanitarian crisis and unite onspecific elements – such as potentialstate or federal legislation. TheNational Campaign for HearingHealth has initiated meetings withleaders in the hearing health economicsector to identify specific joint projects.

5. Deploy the parents and familiesof Hear US to bring emotional con-stituent pressure to bear on legislatorsand elected officials. ■

John Wheeler is the president and CEO ofthe Deafness Research Foundation.

For inquiries, comment and more data,

see www.hearinghealth.net

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The Count

CURRENT (1999) GOAL

Delivered Deaf Delivered DeafFound Device Education Found Device Education

Babies whoneed hearing aids 2,000 1,000 ? 8,000 7,600+ *

Babies who needcochlear implants 1,400 250 ? 4,000 3,800+ *

Total 4,200 1,250 ? 12,000 11,400+ *

*Clinicians guess that in time, the vast majority of parents will choose hearing aids orimplants. Some will choose ASL or other deaf education along with or instead of devices.

Source: Estimates by Deafness Research FoundationFebruary 2000

48 hearing health

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ow can insurance companieswhich cover other prostheses –from coronary stents to hip

joint replacements – continue denyingcoverage of hearing aids and cochlearimplants? Some 15 years after theFDA approved cochlear implants,many insurance companies are stillcalling this technology “experimental,”or claim that cochlear implants operatelike hearing aids and therefore aren’tcovered. Some even deem hearingtechnology as unnecessary – as if hear-ing is a luxury item!

Increasingly, however, these com-panies are coming under fire fromconsumer and professional advocacygroups who are giving insurers reasonto run for cover(age)!

When you or someone in yourfamily needs a hearing test or a hearingaid, who pays? If medical treatmentfor a stapedectomy or cochlear implantsurgery is required, does medicalinsurance cover it? There are no easyanswers.

Although practices vary, mostexisting coverage pertains to a narrowrange of services. It is worthwhile,though, to review current trends inthe general approach and paymentstructures employed by third partyentities (i.e., HMOs, private insurers,Medicaid and Medicare).

Medicare emphatically does NOTcover hearing testing and hearing aids.However, there are some stateMedicaid agencies that do providebenefits for children’s testing andhearing aids. Cochlear implants arecovered by Medicare and most stateMedicaid agencies.

Cochlear implant centers areoften reimbursed less than 50 percent(ranging from 20 to 70 percent) of thecosts for the device. Audiologists whoprovide aural rehabilitation and post-operative services to Medicare orMedicaid beneficiaries recoup lessthan half of their expenses.

People who do not qualify forthese programs generally don’t fareso well either. Many of us have insur-

ance through our employers that offerssupplementary benefits for dentaland/or vision care. These policiesusually cover eye exams or preventa-tive dentistry with a deductible. Then ifyou need glasses or a dental crown, forexample, discounted rates are available.

Yet when it comes to hearing testsand hearing aids, supplementarypolicies are much less prevalentalthough they do exist. For example,Blue Cross/Blue Shield of SouthCarolina recently agreed to providefree hearing screenings and discount-ed hearing aids for their policyholdersthrough an agreement with Beltone.

Other companies such as BestBenefits Hearing Plan, National EarCare Plan, HearX or HearPO offernetworks of audiology clinics and dis-counted fee schedules. Like dental orvision policies, these are discountingplans and have restrictions onproviders and total allowable costs.

If your employer does not offerbenefits for hearing services, ask forthem. Before an employer will add anew insurance expense to a benefitpackage, there must be a demand.Since the hearing plans are designedto work like existing vision or dentalplans, they are relatively inexpensive.When enough people bring the needfor hearing health care benefits to thefore, we will see gains in coverage.

For individuals without access to agroup plan, sometimes contracts areavailable through local audiologists andhearing aid dispensers. It never hurts toask about discount arrangements!

In the accompanying story, AngieKing relates her family’s plight withtheir insurer, Benicorp Insurance Co.of Indianapolis. Certainly this is agood cautionary tale since it isextremely important to understandjust how comprehensive your medicalinsurance actually is, not just for hear-ing health but for any medical need.

While it would be helpful if wecould say that the large insurers likeAetna, US Healthcare, Blue Cross/Blue Shield, Cigna or United

Healthcare provide comprehensivecoverage, that’s not necessarily true.

Medical insurance policies shouldcover ear surgeries such as cochlearimplantation. Most health plans rou-tinely cover ear- and hearing-relatedmedical/surgical procedures, but evenwell-known health plans offer an arrayof insurance contracts which vary inbenefits and premiums.

Although some people must takewhatever their group offers, there isusually the right of appeal. During“preauthorization,” when your doctorrequests approval for your medicaltreatment, you will receive notifica-tion of coverage. If the insurer doesnot approve the procedure for, say, acochlear implant, it may be possibleto overturn the denial by substantiatingmedical need through the appealsprocess. As Ms.King relates, this canbe a difficult and time-consumingprocess. But you needn’t tangle alonewith your insurer – there’s a lot ofhelp available. You must be preparedto fight for your rights.

Hearing health care services arevital; we must be willing to work withothers to bring the need for coverage tothe attention of employer groups, insur-ance companies and the general public.It won’t happen overnight but with newlegislation and focus on infant hearingscreening and increasing scrutiny ofinsurance practices, we’re certainlyheaded in the right direction. ■

Joanne Syrja is the Reimbursement Policy

Analyst for Advanced Bionics Corporation, the

manufacturer of the Clarion Cochlear Implant.

As a former hearing aid user and current

cochlear implant user, Joanne is involved both

professionally and personally in the fight for

recognition of the importance of hearing health

care services.

HCRISIS IN REIMBURSEMENTWHO’S PAYING? BY JOANNE SYRJA, M.P.A., H.S.A.

july/august 2000 49

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y the time she was in her latetwenties, Robin Itzler realizedshe would need hearing aids

to continue in the hearing world.Hearing-impaired since birth, she hasbecome “functionally deaf,” but herpowerful behind-the-ear (BTE) aidsallow her to make the situation a non-issue most of the time. In fact, she isthe director of communications forVeterinary Pet Insurance, a pet med-ical insurance company based inAnaheim, Calif.

Depending on use, hearing aidsneed to be replaced every five years.The new BTE aids Robin plans topurchase cost approximately $2,500each and like thousands of other hear-ing aid wearers, she will have to pay theentire $5,000 herself.

On the other hand, if any of Robin’sthree dogs need hearing tests or hearingaids, they will be covered under her pet

insurance plan. Most human medicalplans do not cover the hearing test, letalone the aids, even though withoutthem the majority of wearers would beunable to function in society.

Like humans, hearing aids mayenable animals to live longer since theyare no longer depressed about theirsilent environment – and are moreaware of pending danger.

Last year, Nancy Hampel, DVM,noticed that it was becoming increas-ingly difficult to communicate with her15-year-old Boston Terrier Peter. “He

startled easily when I had to yell to gethis attention,” Hampel explained.

“Peter was tested and since he stillhad some hearing, an aid was pur-chased for him,” continues Hampel.Using the same technology designedfor humans, an ear impression wasmade to create the mold followed bythe purchase of a human ITE (in-the-ear) aid. With the aid, Peter can hearsound at 40 decibels compared to 90decibels without it. “Now Peter can dothe things he always enjoyed ratherthan be handicapped by the growingsilence. My dog is getting old butthere’s no reason he can’t live life tothe fullest.”

Says Itzler, who is facing the $5,000purchase this fall, “Being an optimist, Idon’t dwell too much on the what-ifs oflife, but I sure wish human medical planswere as good to hearing-impaired peopleas pet insurance is to dogs and cats!” ■

BCRISIS IN REIMBURSEMENTHAS INSURANCE COVERAGE GONE TO THE DOGS?

phonic ear ad 1/2 h

Peter’s hearing aid.

CRISIS IN REIMBURSEMENTA PROPOSAL FOR CHANGE BY KEITH D. MULLER, CSW, ACSW

EXECUTIVE DIRECTOR, LEAGUE FOR THE HARD OF HEARING

50 hearing health

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YOU GET WHAT YOU PAY FOR.Thoroughly review the coverage policy, especially if a member of yourfamily has special needs.

Carefully read the information about deductibles, co-payments and out-of-pocket maximum payments.

Understand the restrictions regarding doctors and hospitals in the network.

Read the list of “Exclusions” line by line to see if any of these pertain toyour medical needs.

Seek information from the experts in your employer’s Human ResourceDepartment if necessary. (These are the folks who buy the group policiesin the first place).

Choosing a higher premium plan sometimes saves money on services and devices.

When there is a specific exclusion against a necessary medical procedureor if your doctor or hospital is not on the preferred providers list, theremay be a different, more appropriate plan for you.

1ST AID!YOUR FIRST LINE of help with insurers should

come from your medical providers:

• Doctor

• Audiologist

• Speech or Rehab Therapist

SECOND ROUND OF RESOURCES:

The Health Plan itself. (Examine the appeals

process and request additional information

concerning your needs.)

• Manufacturers of hearing aids or cochlear implants.

(Most have some experience with insurance coverage.)

• Employer Benefits Manager or Human Resource Dept.

THIRD ROUND OF RESOURCES:

• State Department of Insurance (regulatory agency).

• News reporters, TV reporters, any media contacts.

• State legislators (start by making friends with their staffers).

• Federal legislators (start with local staff).

ecognition of the value of andgaining increased reimburse-ment for hearing health care

should be a national priority for any-one in the field of hearing loss andespecially for infants and seniors.Currently there is a hodgepodgeconsisting of insurance companiesthat cover part but not all of the costsrelated to hearing health care andothers that do not reimburse at all. Insome instances current employees’hearing health care needs are notcovered while retirees’ needs are.Medicaid programs in some stateshave elected to cover the wholesalecosts of hearing aids but many stateshave not made this choice.

The granddaddy of them all isMedicare and by act of Congresswhen it was erected, hearing aidswere not deemed to be medically

necessary prosthetic devices and arenot covered at all.

Medicare is administered by theHealth Care Finance Administration(HCFA). Over the years letters tovarious senators have each beenresponded to politely, each informingthe reader that HCFA handles theseissues. Letters to HCFA have beenresponded to, nicely informing thereader that an act of Congress isneeded to amend the Medicare Act.Apparently no one wants to advocatefor this change.

To that end, the League for theHard of Hearing has prepared a pre-liminary proposal for Medicare tobegin to cover these issues at leastpartially. To do so requires that advo-cates and consumers agree to viewhearing as a health issue and hearingloss as a health problem. Many

advocate that hearing loss is not ahealth issue, but a consumer one.

We all need to do much morework to get people to pay attentionto this problem. If we succeed, hundredsof thousands of people will be verygrateful. ■

To obtain a copy of the League’s

proposal, write to:

Lise Hamlin

League for the Hard of Hearing

71 West 23rd Street

New York, NY 10010

lhamlin@lhh.org

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t the moment my daughterwas born and placed into myarms, I was overwhelmed with

joy at our precious gift of life. Howtiny, how perfect she looked – like anexquisite porcelain doll.

Ten months later, the momentwhen our suspicions were confirmedthat she was deaf, I realized our liveswould forever be changed.

Erica’s story begins in much thesame way as 90 percent of hearing-impaired children: They are born intoa hearing family with no prior historyof hearing loss. But she was morefortunate than many of the others –most babies with hearing loss reach 30months before it is detected.

January 1996

When Erica was six months old, myhusband Mark raised concerns abouther hearing but I didn’t believe him. Ididn’t detect anything unusual.

Two months later, reality set in as Iwatched carefully to see if she seemedto detect sounds – the dogs barking,objects falling. ... She didn’t startle.But what made me begin to acceptthat she probably couldn’t hear wasthat she hadn’t started babbling, evenat eight months.

With assistance from the EarlyIntervention Parent Stipend, ourcounty’s Crippled Childrenprorgam, and the HIKE (HearingImpaired Kids Endowment) Fund,we obtained high-powered behind-the-ear hearing aids for Erica. Andimmediately got busy at home, work-ing with her to bring her up to speedin language and speech.

In a very short time, Erica beganverbalizing, forming one word, thenanother and soon sentences. Within twoyears, our “deaf” daughter was excellingin spoken language. By age three, Ericahad normal speech and expressivelanguage for a child of her age. Actually,she was ahead of her hearing peers.

Then shortly after her third birthday,she began having difficulty understand-ing communication and her speech

became garbled. In sharp contrast to thebright, vivacious toddler of just a fewweeks earlier, Erica became withdrawnand uncommunicative. A hearing testconfirmed a significant drop. No hear-ing aid would be powerful enough tohelp her. What were our options? Asparents of a deaf child, we wanted herintegrated into our oral society.

A cochlear implant was recom-mended.

No problem, we thought, we haveinsurance. I read my insurance policy

and cochlear implants were not listedunder “Policy Exclusions,” so I wasconfident we would have no troubleobtaining preapproval. The wheelswere put in motion ... we requestedpreauthorization for the $50,000surgery and proceeded with the pre-liminary procedures and testing inpreparation for the surgery.

Then the letter arrived fromBenicorp Insurance Co. of Indianapolis.They would not cover the surgery forour daughter, it said. The reason:“Since a cochlear implant is an internalhearing aid, it would not be covered.”

Hearing aid? You’ve got to be kidding.

Still, I thought, educating Benicorpabout cochlear implants and how theywork should clear up this little misun-derstanding. Our doctor wrote a letterclarifying the procedure, and OtologicManagement Services intervened to

ACRISIS IN REIMBURSEMENTERICA’S (MOM’S) STORY BY ANGIE KING

Erica (bottom right) with her family.

resolve Benicorp’s lack of understand-ing about the function of cochlearimplants, but to no avail.

Our best efforts to overturnBenicorp’s denial truly fell on “deaf”ears. I was appalled, not only as a policy-holder but also as a professional whoonce worked in the insurance industry.After all, I had spent almost 10 years ofmy life in claims determining benefitsfor countless policyholders.

So I set out to examine Benicorp,an endeavor that yielded some interest-ing information about other prostheticsand surgeries they covered (but werenot listed in their policy), such aspenile implants, breast prosthetics inconjunction with mastectomies, pace-makers and stapedectomies.

Yet they persisted in their denial ofthe cochlear implant.

May 1999

Erica was now three years old and wewere acutely aware that each day thatpassed was a missed opportunity forher language development and con-sequently, her future. Mark and Iapproached Riley Hospital forChildren in Indianapolis, promising tomortgage our home if necessary to paythe medical bills. Erica’s great-grand-father later stepped forward andpledged financial support as well. Weproceeded with the operation.

… So the saga begins

We filed a complaint with the OhioDepartment of Insurance whichdetermined on December 17, 1999,that the services recommended by ourdoctor were eligible for paymentunder our insurance certificate.

Could Benicorp be in direct viola-tion of the Americans with DisabilitiesAct (ADA) in forcing my daugher toremain disabled by denying her rightto hear? A complaint was filed withthe Equal Employment OpportunityCommission for what we feel is aviolation of the ADA.*

Benicorp refused to respond toour charge, resulting in the issuance ofa subpoena. The insurance companythen filed a Petition to RevokeSubpoena, and the EEOC appearedin federal court for a subpoenaenforcement hearing in March.

Little did I know to what magnitudeErica’s loss would motivate me to helpothers! By this point, my life hadchanged dramatically, not so much as aresult of Erica’s deafness but as a resultof Benicorp’s actions and heightenedawareness of the need to help otherswho are hearing the same ridiculousstory from their insurance companies.

I contacted every major organiza-tion for deaf and hard-of-hearingpeople in America to rally support.We’ve spoken to local and nationalmedia and even landed a spot onABC’s Good Morning America. I’vepersonally met with Vice President AlGore and Republican candidateGeorge Bush to discuss our situationand the changing needs of deaf andhard-of-hearing people. Our story hasbeen told in countless newspapers andmagazines across the country in hopesof informing individuals of the potentialwithin every deaf child and the wonder-ful technology now available.

The National Campaign forHearing Health came to our rescue.They found two powerful attorneyswho took our case pro bono to cham-pion Erica’s cause. In February 2000,our attorneys Dan Donnellon andLou Gilligan of Keating, Muething &Klekamp in Cincinnati filed a class-action lawsuit against Benicorp

August 2000

We are still not a penny closer toreceiving payment but all has not beenin vain. For starters, I have funneled myenergies and experience through HearUS, the advocacy arm of the NationalCampaign for Hearing Health. In fact,I am the national president.

Hear US is in the beginning stagesof bringing all of our resourcestogether for one-stop shopping tomake things a little easier for individ-uals and professionals interested inhearing loss.

Discovering that your child orloved one has a hearing loss can beoverwhelming, especially when youdon’t know what options are availableor where to turn for information. Iwant to deliver hope and encourage-ment to families.

I respectfully acknowledge that thechoice of a cochlear implant is not foreveryone. At the same time, I do haveserious concerns for those who desirethe life-changing benefits of today’spowerful technology but are unable toobtain it. Hearing loss has been over-looked as a vital health concern in thiscountry for far too long. It’s time westand together to put hearing on parwith other health issues, starting withour insurance companies! ■

Angie King is the president of Hear US and themother of two young daughters. She is seekingothers who have been denied insurance benefitsfor cochlear implants to join in her lobbyingefforts.To learn more about Hear US:angie@hearus.org

*Editor’s Note: According to the Kings’

attorney Dan Donnellon, “Our ADA

claim is designed to establish that it is a

violation of federal law for a private

insurer to provide disparate treatment of

deaf persons over hearing persons or to

intentionally discriminate against a deaf

person because of his/her deafness. We

intend to set precedent in that regard.”

Barbara Rouse, vice president of groupoperations at Benicorp, declined to comment.

52 hearing health

Angie has met with presidentialcandidates Gore and Bush aboutthe reimbursement crisis.

THE HEAR US MISSION:To ensure that every child receives the opportunity to

hear and speak. Our initial goal is to support newborn

hearing screenings, with the ultimate goal of universal

reimbursement for hearing aids and cochlear implants

– for people of all ages.

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july/august 2000 53

IN EARLY 1999, Advanced BionicsCorporation and Cochlear Corporationprovided funding to Project HOPEto analyze economic effects of severeto profound hearing loss on our soci-ety. Recently completed by theBethesda, Md., research group, theindependent study includes a model

for measuring costs versus benefits of implementing today’s advancedhearing technology for people whoare deaf.

Data generated by the ProjectHOPE model fills an important gap.The following examples demonstratehow vital this information is for long-

range planning, policymaking andadvocacy efforts in a highly chargedideological climate.

THE SCENARIOThe demand for cochlear implantsand infant hearing aids is growing.Therefore, the pressure to obtain full

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COCHLEAR IMPLANTS

INFANT HEARING AIDS

TAXPAYERSAVINGSAs introduced in our May/June Issue, results from a new study by the Project HOPE Center for Health Affairs

is bringing into focus and quantifying many facets of deafness in America today. Presented here are

additional findings which reveal compelling fiscal implications for our country ... now and in the future.

B Y J O H N W H E E L E R

A N D

E Q U A L

reimbursement for their cost, includ-ing audiology and speech and lan-guage services, has escalated.

This comes at a time when manyclinical centers, even though well-run asbusinesses, are losing money on theirimplant programs. This is especiallytrue with infants and children becausepostsurgical audiological and languagedevelopment services are much morelengthy and costly than in the case oflate-deafened adults, who have alreadyestablished language skills.

In order to achieve reimbursementreform, we must first convince societythat cochlear implants and hearingaids for infants actually save money inthe long run. The vexing problem isthat, up until now, no reliable system-atic studies have been made to projectany such savings.

One of the main weaknesses inestimates derived from earlier calcu-lations, including those which havebeen presented to legislatures, is thatcosts are not converted into constantdollars. A dollar spent in 2015, for

example, for a device or specializededucation of a deaf child is treated ashaving the same value as a dollarspent for intervention and treatment(e.g., an implant) in 2000. This kindof error erodes the credibility ofinsurance reform and reimbursementadvocates before they even start tomake their case to government offi-cials or in the media.

PARAMETERS OF DEAFNESS

By using a formula which offers moreprecision than previously possible,Project HOPE estimates the numberof Americans who are deaf to be738,000. To arrive at that figure, mea-surements were used that match audi-ological standards for categorizingdegree of hearing loss. Under thismethod, losses of 70+ dB are desig-nated as a “severe hearing impair-ment” while losses of 90 dB or more, a“profound hearing impairment.”Individuals with these levels of losshave little or no ability to processauditory signals without a cochlear

implant and are therefore included inthe study.

Having arrived at a definition ofdeafness, the analysis examines onsetof deafness at five age levels:

Prelingual (0-2)

Prevocational (3-17)

Early Working Age (18-44)

Later Working Age (45-64)

Retirement Age (65 and older)

It also totals the cost components ofmedical care, specialized educationand training as well as productivity losses due to reduced lifetime earnings.All dollars are converted into constant1998 dollars in order to make validcomparison of costs in different years.

ACTUAL DOLLAR SAVINGS

Using $40,000 as the full cost ofimplanting a child between infancyand age three, the ratio of dollar sav-ings is 25:1, while for ages three to 17,

54 hearing health

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Rate of Return to Society for Cochlear Implants

Rate ofReturn

Age at Implantation (Cost = $40,000)

25:1

0-2 3-17 18-44 45-64 65+

23:1

11:1

6:1

1:1

Savi

ngs

= $

1,0

20,0

00

Savi

ngs

= $

919,0

00

Savi

ngs

= $

453,0

00

Savi

ngs

= $

253,0

00

Savi

ngs

= $

43,0

00

the advantage is 23:1. What thatmeans is that for every $1 wespend in order to provide acochlear implant for a childunder the age of three, our soci-ety has the potential to save $25in specialized services overhis/her lifetime. Similarly, for theolder child, for each $1 spent thesavings is $23. That calculates toa savings to taxpayers of close to$1 million per child!

Granted, successful out-comes are not guaranteed, butcurrent clinical data indicatethat most children who receive acochlear implant habituate toand utilize it. Because there is arange of benefits and the degreeof language and hearing abilitiesamong them vary, some mayneed more intervention and sup-port services than others.Nevertheless, studies consistent-ly indicate that deaf children who usecochlear implants are better equippedfor integration into our hearing soci-ety than those who do not.

The payoff for infant hearingaids is even more dramatic. Somebabies who are functionally deaf cangain access to sound and benefitfrom external hearing aids. Initialcosts of the devices and support ser-vices vary but average about $4,000.Since that is about one tenth the costof a cochlear implant, the payoffratio becomes 250:1.

IMPACTProject HOPE’s findings offer, for thefirst time, a firm economic position topresent to policymakers – and tax-payers – on the advantages of support-ing early technological intervention.Dollar savings of over twenty to oneare a strong argument which taxpayerswill likely endorse. To enjoy that payoff,however, cochlear implants and hear-ing aids must be readily available andsupported financially through reim-bursement, particularly for deaf new-borns.

In order to convince legislatorsand executive branch officials to adoptadequate reimbursement rates, twosteps are needed.

1. Win the economic point.

This means that in forums such as theCongressional Budget Office and theOffice of Management and Budget wemust show: that net savings accrue withcochlear implant and infant hearing aiduse; and the long-term financial benefit(to taxpayers) is as great as or greaterthan that of other medical treatmentsin the $4,000 to $40,000 range.

By demonstrating the ratio of over20:1 dollar savings through implants forinfants and children and 250:1 forinfant hearing aids, Project HOPE’sfindings may provide the impetus need-ed to gain success in the fiscal arena.

2. Win the political point.

Even with a strong economic case, thecause for infant hearing must breakthrough today’s health care jugger-naut. Universal reimbursement andinsurance coverage must be achievedfor treatments which are so beneficialpersonally and societally – includingan impressive economic impact ontaxpayers. To do so, it is absolutelyessential to mobilize parents of deafchildren and focus their powerfulemotional plea onto legislators andpolicymakers. The passion of mothersand fathers speaking for their deafchildren is needed to achieve change.

This is the task spearheaded byHear US, the advocacy arm of theNational Campaign for HearingHealth.

Another decisive asset in thisreform battle is the attention-grabbing potential inherent ingoing even further in “doing thenumbers” from the ProjectHOPE model. For example, theannual cost to implant the esti-mated 4,000 deaf babies borneach year is approximately $160million (4,000 deaf babies x$40,000 per implant). On thenational budget canvas, $160 mil-lion is hardly visible. However,using the 25:1 savings ratio, earlycochlear implantation providespotential net savings over the life-time of these babies of $4 billion!

When confronted with a sumthat large, and the anguish ofthousands of parents who want

their children to hear, governmentalbudget and policymakers are morelikely to implement change. Whywouldn’t they? Not only does it savebillions of tax dollars, it’s the rightthing to do. ■

John Wheeler is the president and CEO of

the Deafness Research Foundation.

july/august 2000 55

RESOURCESThe National Campaign for Hearing Health1050 17th Street, NW, Suite 701

Washington, DC 200361

800-829-5934

www.hearinghealth.net

Project HOPE Center for Health Affairs7500 Old Georgetown Road, Suite 600

Bethesda, Maryland 20814-6133

301-656-7401

Fax 301-654-0629

www.projhope.org

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4,000X $40,000 = $160,000,000

Cost per year for cochlearimplants for America’s deaf babies

$160,000,000X 25 = $4,000,000,000

Taxpayer savings over their lifetimefrom a 25:1 payoff ratio

The cost for infant hearing aids averages about$4,000, so the savings ratio becomes 250:1.

Note: In September 2011, the Deafness Research Foundation (DRF) changed its name to: "Hearing Health Foundation" (HHF). See: http://hearinghealthfoundation.org/pressreleases?articleid=12