Having the opportunity to gain more information about hearing and hearing loss helps to facilitate understanding and adjustment for those who personally experience hearing impairment, as well as those with whom they live. The progress made over the past decade with hearing aids, cochlear implants, and assistive devices has increased the services available. Additionally, rehabilitative techniques to include counseling, education, training in perceptual skills, as well as the dynamics of communication, all enhance the functional abilities of those with hearing loss.

It is of particular interest to learn more about such services for people with hearing loss available not only in the United States but in other countries. Gaining a global perspective can assist consumers and dispensing professionals to know what options might be of potential usefulness for them. Likewise, it also provides us with a broad measuring stick relative to how our own country is situated in the hearing health care continuum. Certainly, there are many varying rehabilitative techniques available internationally.

It is for these reasons that a panel was assembled to present information at the SHHH Convention in Washington, DC, on July 2, 2005. The panel was composed of six hearing health care service providers and/or consumers from several countries around the world. Each presented information about the types of services available in his/her country for both children and adults with hearing impairment. Likewise, each panelist was provided questions to use as a guide regarding the overview of treatment options and how they were offered in each of their countries.

The sample questions included:

  1. Who are the primary hearing health care providers in your country?
  2. Is Universal Newborn Hearing Screening (UNHS) regularly provided to infants in your country?
  3. What form of services is available to children and adults?
  4. What type of instruction is provided after an individual obtains hearing aids in your country?
  5. Is instruction provided to cochlear implant recipients?
  6. What kind of written material is available and distributed?
  7. Is the use of the hearing aid evaluated?
  8. Is any information collected regarding patient/user satisfaction?
  9. What is the return rate of hearing aids after trial?
  10. Are assistive listening devices and systems (ALDS) available and used?
  11. How are consumers educated about hearing loss and hearing helps?

Each presenter gave an initial presentation for approximately 12 minutes with 20 minutes allowed at the end of all the presentations for questions of the panel members from the audience. Canada, Chile, Israel and the United States were represented, as well as the International Federation of Hard of Hearing (IFHOH) People.

In the following sections, I briefly introduce each author, and then present commentary which they’ve provided upon request.

Quick Facts:
Canada

Land Area: 9,970,610 sq kilometers
Population: 32.2 MM
Population over age 65: 12.8%
Population under age 15: 18.9%
Adult literacy: 99.0%
GDP: $1.02 trillion
GDP per head: $31,780
Employment: Services (74%); Industry (22%); Agriculture (4%)
Human Development Index: 93.2
HI adoption rate: approx 25%

Source: The Economist1,2 and HR

Hearing Care in Canada
Carole Willians-Theberge was the first speaker. She is president of the Canadian Hard of Hearing Association (CHHA), the Canadian counterpart of Self Help for Hard of Hearing People Inc (SHHH). Carole has a profound bilateral hearing loss, the result of a household accident at age 4. She is a lawyer who spent 10 years in private practice, then 13 years in public service within the Canadian government where she worked for the Department of Justice. She is currently counsel for Intergovernmental and External Relations. Well known as a disability activist, she is the co-chair of the National Committee of Federal Public Servants with Disabilities.

The Canadian Hard of Hearing Association was founded in 1982. It is a national nonprofit consumer-based association defending the interests of over 3-million Canadians who are hard of hearing or deafened. It also promotes self-help and supports individual and collective action. It is said to be “the voice of hard-of-hearing Canadians,” with provincial chapters and local branches from coast to coast.

Panelist Carole Willians-Theberge, President, Canadian Hard of Hearing Association (CHHA). One of the struggles of being in such a large country is that access to hearing health care varies widely from place to place, changing with the province or territory, and with urban or rural settings. Likewise, there is a lack of uniformity on issues pertaining to hearing loss, so making generalizations is somewhat difficult.

The Canadian Hard of Hearing Association’s Hearing Awareness Project is designed as a means of fundamental outreach that will ultimately enhance the skills of hearing health care professionals across the country in their dealings with hard of hearing consumers. It will help to make high quality hearing health care accessible. At the same time, hard of hearing consumers, especially those who are part or who come in contact with the extraordinary CHHA family, will be acquiring new and more effective access to the information and assistance that they need to lead productive and happy lives.

Nation-wide surveys are coming to a close. The first asks hard of hearing consumers to identify the gaps in hearing health care services that they may have experienced. The other asks hearing health care professionals (audiologists, speech language pathologists, otolaryngologists and hearing instrument practitioners) what they feel will help them to do their job better. The surveys—especially the one for professionals—were designed in collaboration with various professional organizations. As a result, stronger relations and partnerships have been forged with these groups.

The survey results will help to identify and prioritize key issues and gaps in the Canadian hearing health care system, and will eventually lead to the design of an overall strategy to optimize the professional resources and services that are available in communities across Canada.

Quick Facts:
Chile

Land Area: 757,000 sq kilometers
Population: 14.8 MM
Population over age 65: 7.2%
Population under age 15: 28.5%
Adult literacy: 95.2%
GDP: $96 BB
GDP per head: $6,180
Employment: Services (60%); Industry (25%); Agriculture (15%)
Human Development Index: 84.4
HI adoption rate: approx 5%

Source: The Economist1,2 and HR

Hearing Care in Chile
Nelly Hofmann was born in Vienna, Austria, and grew up in Chile. She has a history of hearing impairment in her family, and she has used hearing instruments since age 55. Hofmann has been involved in volunteer work in schools for the deaf in Chile, and since joining SHHH—which showed her how to cope with her own hearing loss and to help others—she founded the hard of hearing group for adults, Ayuda a la Sordera (AYSOR, translated into “Help for the Deaf”), in Santiago.

Panelist Nelly Hofmann, Founder, Ayuda a la Sordera. Chile is far away in the Southern Hemisphere of South America, between the Andes mountains and the Pacific Ocean. It is almost 3000 miles long and only 100 miles in its widest extension, where one of the driest deserts of the world is situated with its huge open-pit copper mines. At its most narrow strip in the south are the great Patagonian ice fields. In between we have agriculture, vineyards, we grow fruit, and harvest salmon from the sea. These are our main export products, yet they are not enough to enable the government to erase poverty and improve the educational system.

The average yearly income per capita is equivalent to $4,500, as compared to $35,000 of the American citizens; our income is 12% of that of a US citizen. The population of Chile is about 15 million, of which about 2% are registered as deaf and hard of hearing.

In Spanish there is no adequate translation for “hard of hearing”; a word commonly used is “hipoacusia,” which can lead to confusion. The deaf population has a very low educational standard: 43% have not finished primary education, and only 2.5% have achieved a university degree. Only 29% of people with auditory problems have paying jobs.

Yet, more than half of the deaf population is in the middle socioeconomic group, while about 2 of every 5 people with hearing deficiency are in the lowest income range. Only 4% of the hearing-impaired population are in a higher socioeconomic level—about 15,000 people. Of this group, which can afford hearing aids, cochlear implants, and private rehabilitation services, only 5% ask for and obtain hearing aids or other assistance. In total, only 1 out of 16 people (6%) with hearing loss use hearing aids (usually only one aid) and many cannot afford new batteries.

Likewise, the use of Assistive Listening Devices is restricted due to the high cost, and only 6% communicate through the Internet and e-mail (however, this is improving). A total of 2.5% of the deaf population use sign language. Unfortunately, in Chile, most hard of hearing people isolate themselves, due to the lack of information and of funds to obtain some of the assistance to improve their standards of living.

The primary hearing health care providers in Chile are government and private institutions. UNHS is now only provided in a few private hospitals and on an experimental basis in several public hospitals, but as per next year this should be installed in all hospitals. Diagnosis and hearing evaluations are available for all, as well as a program for obtaining hearing aids and education in special schools, but only after a lot of legal proceedings.

Typically, after an individual receives a hearing aid from Chile’s social security system, there is a follow-up conducted a few months later. The patient receives instructions on how to care for his/her aid, but there is no funding for batteries. Privately, the hearing aid provider looks after his/her clients.

In all of Chile there are only 150 cochlear implant recipients. Most are children, and there are only 30 adults—of which I am the oldest! Relative to cochlear implants, there are no instructions or therapies provided to cochlear implant recipients yet. Written material on hearing health care is scarce. I have never been at a doctor’s office—not even in private practice clinics—where they distribute written advice about hearing problems, while in the USA one has the possibility to read about everything and thus have the opportunity to become well informed.

To my knowledge, nobody “evaluates” the use of hearing aids, and no information is collected regarding the satisfaction of the use of hearing aids, unless by the individual hearing aid provider. Likewise, there is no official tally regarding return rate of hearing aids. Each hearing aid provider has his/her own way to check. There is no trial period. Privately, you give the provider a guaranteed check, use the aid for 2-3 weeks, and then either you keep or return the aid(s). ALDs are too expensive, and very few people can afford them, although some special telephones are available (there are no relay services or TTYs).

The educational process for hearing aid consumers is very difficult, and the primary channel is through private institutions, and hearing aid or cochlear implant providers.

As you see there is a lot that needs to be done relative to hearing care in Chile. After having been to several SHHH conventions and receiving material and ideas from the people at SHHH—and of course from the late Rocky Stone, who was kind enough to assist me in many, many ways starting nearly a decade ago (besides the fact that “he saved my life” as he probably saved many lives through his advocacy for individuals with hearing loss).

I have since founded an association for hard-of-hearing adults called Ayuda a la Sordera (AYSOR) which translates into English as “Help for the Deaf.” We have taught the people how to cope with their hearing loss. Most of the members leave once they have gained the knowledge and skills to live their lives to the fullest. However, some are glad to remain and meet other hard of hearing people. Unfortunately, very few acted like “prophets” and we failed in advocacy. Chileans, in general, don’t like to show or talk about their feelings. For many, lack of hearing is akin to failing, and we are constantly striving to change these attitudes.

We are now reorganizing and we hope to find new members and form new groups. We are also encouraging that our members learn to use computers and utilize email. If they do not own them, they can go to any number of places to access the Internet in order to communicate with other people who have a hearing loss.

As stated earlier, batteries are a major deterrent in the use of hearing instruments. They can be expensive, and they are not yet available in drug stores—only at opticians or at the hearing aid dispensing practices. So, on weekends, it can be problematic if you run out of batteries at an inopportune time (eg, weekends). We are trying to change this.

There is a new government plan for the disabled, which is supposed to start in 2006 which should improve knowledge and assistance for all who need it. Importantly, the plan includes UNHS and long-term hearing care for all those identified via the program. However, at least initially, it will apply only to “at risk” (eg, premature) births. Those detected will be taken care of with hearing aids, cochlear implants, and the necessary treatment. This should improve awareness of the hearing problem, increase the number of hearing care professionals, and social security will be forced to provide coverage for hearing aids and cochlear implants, as well as rehabilitation. And we anticipate that this will improve the possibility of better education for the hearing handicapped.

Quick Facts:
Israel

Land Area: 20,770 sq kilometers
Population: 6 MM
Population over age 65: 9.8%
Population under age 15: 27.7%
Adult literacy: 95.4%
GDP: $122 BB
GDP per head: $17,540
Employment: Services (79%); Industry (19%); Agriculture (2%)
Human Development Index: 88.3
HI adoption rate: approx 15%

Source: The Economist1,2 and HR

Hearing Care in Israel
Ahiya Kamara, MA, is a co-founder and currently serves as the executive director of Bekol (which means “with hearing”), the organization of hard of hearing and deafened people in Israel. His hearing was damaged when he was 1 year old. He has been a lifetime user of hearing aids and various hearing aid accessories. Kamara volunteered to serve in Israel’s Defense Force and later earned his bachelor’s degree in psychology from the Hebrew University in Jerusalem and a master’s degree in special education for the hearing impaired from Tel Aviv University. He is one of the four founders of Bekol, which was established 7 years ago.

Jerry Reichstein, EdD, has also been hard of hearing since age 1, and has been an audiologist and educator of deaf and hard of hearing children and adults for more than 50 years. Although he began his career in the US, he and his wife moved to Israel in 1954. There he has set up and directed new services in the field of hearing impairment to include the Micha Center for Preschool Deaf and Hard of Hearing Children in 1958 and a program in Tel Aviv University to train teachers of hearing impaired students in 1978. With Kamara, he helped co-found Bekol in 1997, along with two other individuals.

Panelist Ahiya Kamara, MA, Executive Director, Bekol. Israel is a small country, about the size of the state of New Jersey, located at the eastern end of the Mediterranean Sea. Our population is close to 7 million. We have reasons to think that the incidence of hard of hearing people in our country is close to the 10% similar to what is generally cited in the Western World. That means there are probably close to 700,000 hard of hearing people in Israel.

In the first part of this paper, we will summarize the services that are provided to hard of hearing people by official authorities, such as government ministries, our comprehensive social insurance system, and medical insurance plans. Then we will summarize the responsibilities and tasks that Bekol has taken upon itself in order to help improve the well being of the country’s hard of hearing population. We very much believe in the principle of self-help: If the authorities do not offer a service or a program that we feel is needed, we do our best to convince the authorities to develop it. If they do not, then we consider doing it ourselves.

All services for hard of hearing people in Israel—as in other countries around the world—begin in audiology centers. We have two types of audiological centers: hospital centers and private clinics. There are three academic training centers, which train audiologists and speech-language pathologists.

We already have neonatal screening and school age screening. Screening of people ages 65 and above is also gradually becoming the norm in our country. This project is being developed by an international Jewish service organization, ESHEL/JDC, in cooperation with Israeli municipalities. ESHEL activate trained senior volunteers around the country and they perform about 12,000 hearing screening tests a year. About one-third of the people screened fail these tests and are referred for extensive hearing tests at an established audiology center.

It is estimated that about 80-100,000 hearing aids are being used in Israel, which means that about 15% of our hard of hearing population use hearing aids. Up to the age of 18, Israel’s public health care covers the cost of hearing aids and cochlear implants. However, beyond the age of 18, the government covers less than 10% of the average cost of a hearing aid in our national health insurance. In addition, about 80% of the public in Israel have extra private health insurance, which provides greater coverage for hearing aids—up to 1/3 of the costs. As for cochlear implants, adults receive assistance of 30% of the cost from the national health insurance.

Individuals considered “deaf”—those whose hearing loss began prior to age 3 and whose hearing thresholds in their better ear is 70 dB or more—are eligible for additional benefits. During their working years (ages 18 to 65) these individuals receive a monthly support of $70 to assist covering “communication” expenses, such as hearing aid batteries and accessories. Once every 4 years, these individuals are eligible for $660 to purchase hearing aids or other assistive devices.

Deaf individuals are eligible for broader public assistance based on their specific needs. This includes subsidized annual hours of either signed translation or real-time captioning, as well as tax refunds for purchasing fax machines and other hearing assistive devices. An interesting note, relevant to life in Israel, was the free pagers given to our population during the hostilities in Iraq. As in the first Gulf war, vibrating pagers were once again in great demand. Fortunately, this time around, no pagers went off warning of an Iraqi Scud missile attack!

Generous aid in the form of professional rehabilitation is available through Israel’s Social Security Services. The rehab supports any individual with a disability percentage higher than 20% in professional studies and in obtaining vocational experience. This assistance is available to those who lack a profession, or who can no longer be employed in their profession due to their disability.

The assistance includes full funding of professional studies, funding of transportation expenses, housing (if relevant), and disability-related assistive needs. For a hard of hearing individual, this includes purchasing of an FM system, real-time captioning or signed translation, and other learning aids. Upon graduation, career development services are also available to help seek work. Once employed, social security funds 90% of accessibility needs at one’s workplace. For hearing-impaired people with a 50% disability and beyond, this funding includes: acoustic adjustments, hearing assistive devices, a laptop to be used for captioning, and other devices—with a budget of $7000.

The State of Israel, independent since 1948, has faced existential challenges for many years. Israel’s economic, intellectual and spiritual resources were focused on building and defending our country. Hence, the approach to the needy and those not belonging to the mainstream of society had been one of “mercy and charity.” Since the 1990s, Israel has taken a great step forward in this area. There is increasing awareness of social issues. Civil, disabled, and self-help groups have been flourishing. At the moment, Israel is high in the ratio of social rights organizations to the population. This new awareness made a change in the approach towards the disabled, as well as the organizations that represent them. Bekol and other organizations have been leading a long battle for changing the social approach from charity to equal rights.

Two large demonstrations of disabled groups brought, for the first time, the realization that disabled people must act for themselves. We have come to realize how powerful and how necessary such action is. In 1998 the first four sections of the Equal Rights Act for People with Disabilities were passed, and the 5th section—addressing accessibility needs—was passed only 2 months ago. It is regarded as a social revolution in dealing with people with disabilities in Israel. The law is similar to laws legislated in other countries, such as the ADA in the US.

Bekol, together with Bizchut, the organization that initiated the equal rights law, were the first to take legal action related to a violation of the equality law. We sued a municipality in Northern Israel following their dismissal of an oral deaf social worker, a member of Bekol, who had held her position successfully for 5 years. The municipality claimed that a deaf person could not be a social worker. We stated that she is not “deaf”; she is a person whose ability to perform her duties successfully should be evaluated: Is she aware of her limitation? Does she do all that is possible to overcome it? Is she using hearing assistive devices? Does she lip read?

After many discussions, the municipality agreed that she could return to part-time work as a social worker, and part-time work as a systems administrator at the local welfare department. The municipality also decided to meet all of her accessibility needs so that she could perform her duties. Today, the battle is behind her, and she is very satisfied at her work place: All staff meetings are translated and volunteers assist her with phone calls. Following this case, many other people with disabilities have taken legal steps demanding their rights, and exposing workplace discrimination based upon their disabilities.

The first four sections of the law of equal rights for disabled people were passed in 1998 following fierce conflicts, including threats of resignation from the Minister of Finance. The fifth section, dealing with accessibility, was passed 2 months ago with relative ease. Passing the law took 2 years of strenuous work by all parties involved: disabled individuals, professionals, and legislators. Unlike 1998, when we all turned out to rally for the law and pressure parliament members for a positive vote, this time around we calmly observed the vote taking place in Israel’s parliament building, the Knesset. This difference in atmosphere demonstrates how much the public approach has changed in Israel since 1998, and how legislators have come to realize the strength and justice of our cause.

Parallel to the equality law, Bekol has been continually active on the subject of legislating subtitles on TV. In 1992 a law was passed which states that one quarter of TV programs recorded in Hebrew must be accompanied with subtitles for the hearing impaired. For years, the broadcasting authorities failed to obey this law, until Bekol appealed to Israel’s Supreme Court in 2000, and since then there has been progress in implementing the law.

As a result of united pressure of the hearing-related organizations the legislature passed new laws in the last month to ensure that 100% of broadcasts, including live shows, will be accompanied by subtitles by the year 2013.

Panelist Jerry Reichstein, EdD, Co-founder, Bekol. How does Bekol come into the picture of services for Israel’s hard of hearing population? Bekol was set up in 1997 by a handful of young hard of hearing people and one older gray-top (me). Today we are a vibrant organization with a mailing list of about 3000 people who live all over the country, five self-help groups, a staff of seven people. The staff consists of the director, the coordinator of our accessibility programs, a half-time audiologist, two social workers each of whom has a half-time position, the coordinator of our volunteers program, and a secretary. Our National Ministry of Welfare subsidizes our social workers. In addition we have about 150 active volunteers.

As we already know, accessibility for people with disabilities, including hard of hearing people, has been made compulsory by very recent national legislation. However within 2 years after our establishment in 1997, Bekol members were already approaching theaters in Tel Aviv, Jerusalem, and Haifa, advocating infrared systems for hard of hearing people. In the Greater Tel Aviv area (the center of Israel’s largest population concentration), there were at least 10 theaters which had already installed IR systems before the above legislation. There is also an inspiring list of other institutions all over the country, including two universities and seven museums which had voluntarily installed accessibility equipment and services as a result of requests and advice from Bekol and other concerned parties in the community.

Bekol’s most ambitious program has been to establish in 2004 Israel’s first Accessibility and Hearing Assistive Technologies Demonstration Center in Tel Aviv. Before describing this new center, we want to point out that the Accessibility and Hearing Assistive Technologies Demonstration (HATs) Center, became a reality on the basis of an unusual coalition involving Bekol and three important national service organizations. This coalition includes two organizations that work with the elderly and another that serves people of all ages with disabilities. We were also assisted by two generous grants, one from our national Social Insurance Institute and the second from a private family fund which a local Rotary Club secured for Bekol. We have gone into these details here as this may give readers ideas about possible partners and sources of funding for similar work.

This coalition set up the HATs Center we are about to describe, because a number of years ago we all realized that, in Israel at least, hard of hearing people and the public at large know very little about accessibility and personal hearing assistive technologies. The overall plan includes four HATs centers, one in each of our four main cities. The second HATs Center, in Haifa, in the north of Israel, is in the process of being set up.

The focus of the HATs Center in Tel Aviv is an exhibition of a wide range of personal HATs. Under the supervision of staff members and our trained volunteers (discuss shortly) visitors can try on and learn about all the equipment on display. An adjacent lecture hall has high-quality acoustic treatment and group FM, sound field, and Infrared systems—both for our lectures and for demonstration purposes.

The HATs Center also has a strong outreach program with the dual purpose of educating the entire population about hearing loss and accessibility using HATs, and inviting people to visit our Center.

To get the personnel needed to be guides in our Demo Center and to carry out our Outreach Program, we set up a training program with 25 carefully selected hard of hearing volunteers. This training program is similar to the SHHH Academy of Hearing Loss Support Specialists [see January 2005 HR, p 82]. The curriculum of our course includes 50 hours of lectures and discussion on topics such as hearing loss, rehabilitation, HATs and accessibility, speaking skills, and how to handle questions.

With regard to the Bekol Outreach Program, there are two important aspects:

  1. We send out our trained volunteers to speak in places, such as retirement homes and day-care centers. We urge our hosts to have their staff members and the adult children of residents and center-participants present at our lectures. We have found, for instance, that many elderly people are not able to make the decisions to purchase the personal hearing assistive equipment they require.
  2. We make special efforts to attract a wide range of professionals and administrators to our HATs Center, including social workers, medical, municipal and national government personnel, and staffs of insurance and health plans. All these people are frequently involved in making decisions about accessibility and HATs for hard of hearing people.

It is important to note that the HATS Center in Tel Aviv is now setting up what we think will probably be the most developed computerized data bank in Israel on the wide range of subjects involved in hearing impairment, hearing impaired people, and rehabilitation.

Additionally, there are three other important activities sponsored by Bekol.

  1. Short Courses. The organization maintains a constant on-going series of short courses on a wide range of topics for its members. A primary task of any self-help organization of hard of hearing people is to teach and update its members on our disability and educate people on how to cope with hearing loss. There are new developments all the time: new knowledge, insights, coping techniques, new developments in hearing aids, and new assistive technology.
         We have short courses going on nearly all the time in Tel Aviv and in other major cities around the country. We refer to these courses as our “Academia.” We make our courses short, attractive, meaningful, and—of course—accessible. Our introductory course in auditory training is now called “My Hearing and I.” In our Hebrew-speaking culture, a very important course in our Academia is our small-group lessons in English, which is so important for advancing at work and studying in higher education. The same goes for courses in computer skills. So many hard of hearing people cannot study in “regular” classes elsewhere because they are too large and not accessible.
  2. Public Relations. The fact is that many (probably most) people who are not hard of hearing themselves, whether they be the general public or specialists (the medical world, other professionals of all kinds, government personnel, and the media), do not really understand what it means to be hard of hearing. Therefore, we must seek every opportunity to explain hearing loss and the problems and needs of hard of hearing people.
         About 4 years ago, a public relations man in the entertainment world came to us with the idea of sponsoring a public sing-along involving normal-hearing and hard of hearing people, as well as those who are deaf. But the main attention is on normal-hearing and hard of hearing people. Our PR friend does his work voluntarily. From year to year, the number of people who participate grows as does the amount of publicity and attention to hard of hearing people in the press and broadcast media.
  3. Volunteers. An organization of and for hard of hearing people simply cannot function without volunteers, whether they be hard of hearing or normal-hearing individuals. The more the merrier. Bekol has three major groups of volunteers: 1) Assistants in the office (most of them have specific and permanent responsibilities); 2) The hard of hearing lecturers and guides; and 3) Information Hotline in which hard of hearing people or family members all over the country who have questions or problems can contact us by phone, fax or e-mail. Volunteers for the Hotline have been carefully trained and receive on-going professional guidance and supervision.
Quick Facts:
United States

Land Area: 9,372,610 sq kilometers
Population: 295.7 MM
Population over age 65: 12.5%
Population under age 15: 21.5%
Adult literacy: 99%
GDP: $12.28 trillion
GDP per head: $41,530
Employment: Services (74%); Industry (23%); Agriculture (3%)
Human Development Index: 92.7
HI adoption rate: approx 23%

Source: The Economist1,2 and HR

Hearing Care in the United States
Ellen Rupert has served as past president and vice president of Hearing Endeavor for the Albany Region (HEAR). She is an assistant director of training for the New York State Thruway Authority. Appointed to the New York State Board for Speech Pathology and Audiology, Rupert served two terms. She teaches an “Implications of Deafness” course at The College of Saint Rose in Albany, New York, and is co-author of the book Voices from a Quieter Land published by Hear Again Publishing.

Panelist Ellen Rupert: I have worn hearing aids since I was 5 years old and have had a wide variety of experiences with health care services, both positive and negative. I am amazed how far we have come in some ways, yet there still is much room for improvement especially in the area of coordination of services.

In the United States, the primary health care providers are audiologists, hearing instrument specialists, ENTs, and MDs. The Better Hearing Institute (BHI) has a training program for family practice doctors and their staff members to educate themselves about identifying people who have hearing loss and making appropriate referrals.

Universal screening is mandated for infants in 37 states. Efforts are underway to make it universal in all 50 states. When I was a member of the State Board for Speech Pathology and Audiology, we worked very hard to help establish this fine program to identify hearing loss at an early age in New York State.

Current services that are available are: hearing assessment or testing, fitting of hearing aids, aural rehabilitation and recommendations for cochlear implants. Relative to the amount and quality of instruction, it varies considerably within and between dispensers and audiologists. For example, a recent survey by The Hearing Review stated that only 24% of the respondents indicated that they provide aural rehabilitation and post fitting instruction. Some provide verbal or written instruction, manufacturers’ literature and aural rehabilitation programs with varied levels of classroom instruction. Manufacturers’ materials and recommended readings are given to hearing health care consumers.

Similarly there are different levels of training and instruction given to cochlear implant patients—much less comprehensive than I would have expected.

The successful use of the hearing aid is evaluated by the dispensers and audiologists to determine satisfaction in most (71%) cases. The most frequent means for assessing the usefulness of the aids is the practice’s own survey (46%), followed by the COSI (17%) and APHAB (11%) measures.

Hearing instrument returns for credit vary widely by dispensing outlets, as well as by what might define as a “return.” Washington University Physicians Survey demonstrated that nationally there is a 17% return rate while others may be less than 3%. The Hearing Industries Association (HIA), representing over 90% of the hearing aid manufacturers in the US, reported a return rate of 12.4% in 2004.

There is room for lots of improvement in the area of providing information on assistive listening devices and group listening systems. Some dispensing professionals provide information, but I believe that SHHH is a leader in providing this information. There are so many people who are unaware of all that is available. I have learned a lot from our local HEAR (SHHH chapter) and continue to learn more.

My overall experience has been that a great deal is left up to the hard of hearing consumers to seek out information and educate themselves. The best scenario is that you will be lucky enough to have an audiologist or dispenser who provides aural rehabilitation, as well as a range of information on communication strategies. This information helps you adapt to the challenges of hearing loss. In fact, the professionals and the information that they provide can be the key to achieving success and maximizing all of the aids, assistive devices, and strategies.

It is up to us, as hearing-impaired consumers, to be assertive, seek information, and educate the public and ourselves about hearing loss. SHHH provides tremendous support groups to help us do this. I am also excited about the peer-counseling program being introduced by SHHH which has the potential to help a lot of people with hearing loss.

Hearing Care in Developing Countries
The final panelist, Marcia Dugan, is president of the International Federation of Hard of Hearing People (IFHOH) and also serves on the Board of the New York State Association of SHHH. She is a past-president of the SHHH National Board of Trustees, as well as a past-president of the Rochester Chapter of SHHH. In 1999, Gov George Pataki appointed her to the New York State Hearing Aid Dispenser Advisory Board. A former director of public affairs at the National Technical Institute for the Deaf in Rochester, New York, she is the author of Living with Hearing Loss released by Gallaudet University Press in 2003.

Panelist Marcia Dugan, President, International Federation of Hard of Hearing People (IFHOH): The International Federation of Hard of Hearing People (IFHOH) is a coalition of National Associations of and for hard of hearing and late-deafened people. IFHOH was organized 1977, and currently has 49 general and associate members in 32 countries.

IFHOH came together for the purpose of providing a platform for cooperation and exchange of information and to promote greater understanding among hard of hearing people worldwide. Now, nearly 30 years later, as an umbrella organization and through its individual organizations, IFHOH works worldwide for access for hard of hearing people. The head office is located in Stockholm, Sweden.

I took the questions provided by the moderator, Dr. Wayner, to a recent meeting at The Hague and polled the European members of IFHOH. These European countries—all highly developed—are working very hard in the European Union to ensure “subtitling”—what we in the USA call captioning.

The responses from members of the European organizations often indicated that they were way ahead of us in the US relative to providing hearing aids and cochlear implants free; however, they also did not have the choices we have in the US. They, too, would like better rehabilitation and follow up after receiving a hearing aid. And in many cases, they are way ahead of us in the use of assistive listening systems and devices.

However, what I wish to address is a program IFHOH has initiated for developing countries. The IFHOH Hearing Awareness and Information Program for Developing Countries has two distinct parts:

  1. A pilot presentation that can be taken to developing countries to draw attention to the problems and needs of people experiencing hearing difficulties and to encourage the establishment of a national task force to develop new or improved hearing health care services in those countries.
  2. A follow-up national hearing awareness and training program in conjunction with the World Health Organization (WHO).

Most of the hard of hearing people living in underdeveloped countries—and, indeed, people living in the developed world—do not have hearing aids and are therefore not able to communicate adequately with their families, friends, and others around them. In some countries, these people are quite literally outcasts. Furthermore, in the poorer countries, there is too little knowledge of prevention and causes of hearing loss. Medical and audiological services may be non-existent or, at best, limited. The equipment used for diagnosis and for the hearing instrument fitting process is often outdated and inadequate. Professionals often have neither the motivation nor the means to improve their skills and services provided to consumers. Consumers themselves do not have the knowledge and, therefore, the impetus to ask for personal help, let alone improvements in their country’s hearing health care system.

The IFHOH Hearing Awareness and Information Program is intended to assist in dealing with this problem, which is also being tackled by the WHO through its World Wide Hearing project. The mission of World Wide Hearing is to promote better hearing through the provision of hearing aids and training in developing countries and under-served communities. The target audience for the pilot presentation are influential and suitable people with direct or indirect interest in hearing health care services—from government officials, social workers, medical and audiological professionals, manufacturers (commercial and not-for-profit), NGOs, to hard of hearing and late-deafened people themselves. In essence, the introductory presentation has the following detailed objectives:

  1. To stimulate hearing awareness in the developing country.
  2. To form the nucleus of a national self-help organization for hard of hearing and late-deafened people. This is so that hard of hearing and late-deafened people can come together to advocate for new and better services for people with their kind of hearing problems.
  3. To establish a recognized national co-coordinating body to implement and monitor any hearing awareness, training, or other programs that may be arranged as a result of the pilot presentation. This body would include both professionals and consumers and it would liaise closely with IFHOH and other organizations supporting the national program.
  4. The WHO will recruit reliable people to train as “trainers,” thus encouraging the development of better local and outreach hearing health care services. This is an area, for example, in which hard of hearing and late-deafened people themselves can support those in rural and isolated communities who would otherwise not receive at all—or receive infrequently—practical hearing health care and support.
  5. To provide the impetus for an epidemiological survey of hearing disorders.The more data there is about the number of people in need of a hearing-aid or other types of hearing health care, the easier it will be to persuade governments and other major funding agencies that new or improved hearing health care services are urgently required for the people who require them most.

This exciting and important IFHOH project should make a great difference to the daily lives of people living in developing countries where there is currently little or no hearing health care service or support.

However, the success of this far-reaching IFHOH project is very dependent upon sufficient financial and other support being forthcoming from grant-giving bodies, corporate sponsors, donors, and others interested in what IFHOH is trying to achieve. The future will see a period of intense work, including fundraising, in order to complete the first pilot presentation in India.

The WHO’s project, WWHearing, is developing pilot projects in India and also in different countries, with particular emphasis on China and possibly also South Africa and Brazil. In addition, the WHO has called on the private sector to provide affordable hearing aids in the developing world and emphasized that the price of hearing aids will remain prohibitive until all stakeholders work together to reduce costs.

 Donna S. Wayner, PhD, is an audiologist and president of Hear Again Inc, Latham, NY, and is the former director of The Hearing Center at the Albany Medical Center Hospital, Albany, NY. She is the founder and professional adviser of HEAR, a self-help group in the Albany region, an adviser to the New York State Association of SHHH, and is the author of numerous books for clinicians and consumers listed at www.hearagainpublishing.com.

Correspondence can be addressed to Donna S. Wayner, PhD, Hear Again Inc, 37 Grandview Dr, Latham, NY 12110; e-mail: [email protected];   Web site: www.hearagainpublishing.com

References
1. Pocket World in Figures. The Economist; London: Profile Books Ltd; 2001.
2. The World in 2005. The Economist. 2005; [Suppl] January.