AG Bell Director of Member Services
The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) is a unique membership organization and information center foron pediatric hearing loss and the auditory approach. AG Bell emphasizes the use of hearing technology (including hearing aids and cochlear implants), in conjunction with spoken speech and speechreading. AG Bell focuses specifically on children with hearing loss, providing ongoing support and advocacy for parents, professionals, and other interested parties.
Alexander Graham Bell established the organization in 1890, as a natural outgrowth of his long-standing career teaching people with hearing loss to speak,—this during a time long before any hearing technology was available. Convinced of the spoken language potential of people with hearing loss, Bell promoted auditory approaches to hearing (re)habilitation and established a school with this focus. In fact, his wife, Mabel, was a student of his. Today, AG Bell's mission, 'advocating independence through listening and talking,' remains essentially unchanged from Bell's original vision more than 100 years ago.
One of AG Bell's most important goals is disseminating information. Hearing loss is the most common congenital anomaly found in newborns—three per thousand babies are born with a significant loss, and many more are born with milder forms of hearing loss. Over 90 percent are born to hearing parents. For these new parents, clear, user-friendly information is vitally important so that they may begin taking positive action on their child's behalf immediately. AG Bell's recently released booklet, So Your Child Has Hearing Loss: Next Steps for Parents, provides families with an introduction to issues related to hearing impairment, including technology options, communication options, and educational issues. Several states now distribute Next Steps to families in early intervention programs, and many early identification centers are providing it to parents at the time of diagnosis.
Just as early identification and intervention efforts have expanded over the last ten years, so has research and development into hearing technologies. In tandem, these trends have allowed more and more children with hearing loss to gain access to sound and successfully learn to speak. As a result, AG Bell has experienced a surge of interest in the development of quality auditory programs for children. Because the critical period for speech and language occurs during the first two across the first six years of a child's life, it is vital that young listeners have an opportunity to practice these skills in a sound-enriched environment which that facilitates spoken interaction. Oral options include any approach or communication mode that focuses on developing spoken speech skills in children who are deaf or hard of hearing. Specific techniques that fall under the auditory 'umbrella' include; the auditory-oral, Auditory-Verbal and Cued Speech approaches.
With spoken speech and written language skills, children using the auditory approach are armed with the skills necessary to communicate effectively in a world comprised primarily of hearing people. Studies show that this is, indeed, a reality for the majority of children using such approaches. For example, 88 percent of the 100 16- and 17-year olds with hearing loss studied by Geers and Moog (1989) achieved proficiency with spoken language and high levels of speech intelligibility. Further, thethese teens possessed reading abilities that were approximately double the national average for children with hearing loss. Other researchers have found that individuals who are taught through the use of amplified residual hearing from early childhood become independent, speaking, and contributing members of mainstream society (Goldberg & Flexer, 1991; Ling 1989; Yoshinaga-Itano & Pollack, 1988). To help educate educators and professionals about auditory options, AG Bell has developed a brochure, Something to Talk About: Oral Approaches for Children with Hearing Loss. In addition, AG Bell provides outreach services and resource/referral information for families seeking auditory programs nationwide.
Proactive early identification efforts are impacting AG Bell's membership in several important ways. With early identification legislation currently a reality in 32 states(as of this writing), more and more children are being diagnosed at birth—so AG Bell's members are getting younger and younger.
For parents with infants, our goal is to encourage family participation in early intervention programs. We also emphasize the importance of fitting babies with the appropriate technology as soon as possible to provide them with quality auditory cues. To assist parents in locating appropriate services, AG Bell provides local referrals, and also maintains an extensive in-house library. In addition, AG Bell prints and distributes many books and curriculum development tools for parents and professionals to use in early intervention efforts. An especially good resource from AG Bell for educational audiologists is the Educational Audiology Handbook, written by Cheryl DeConde Johnson, Ed.D. and colleagues.
Consistent and early identification of hearing loss has also led to the increased identification of children with mild-to-moderate hearing loss, a group who in the past, sadly, may never have been diagnosed, or may have been misdiagnosed as having other difficulties such as attention deficit disorder. Instead, these families can get plugged into the 'system'—and ensure that their children receive the skills and technology necessary to develop speech/language skills along an age-appropriate schedule. AG Bell has worked to expand its focus to reflect the needs of individuals affected by mild-to-moderate loss. This new area of emphasis was reflected at our 2000 convention in which several presenters examined the needs of the mild-to-moderate hearing loss population, especially in the classroom. In addition, AG Bell publishes the Speech and Hearing Checklist, a brochure that highlights the major language milestones across the first five years of life, which parents can use to track their child's development.
For children with severe-to-profound hearing loss, more and moregreater numbers of families are opting to use advanced hearing technology, including digital hearing aids and cochlear implants. The decision to obtain a cochlear implant, parents tell us, is often based on information they receive about outcomes—that a cochlear implant will allow their children to receive higher quality sound and thus function more effectively in the hearing world. Not surprisingly, children are the fastest growing group of cochlear implant recipients.
Current research emphasizes the role of cochlear implants in helping a child mainstream successfully. In fact, a correlation has been observed between the length of cochlear implant experience and the rate of full-time placement in mainstream classrooms (i.e., the longer a child has an implant, the more likely they arehe or she is to be mainstreamed). In addition, a negative correlation has been found between the length of implant experience and the number of hours of special education support used by fully mainstreamed children (i.e., the longer the child has an implant, the fewer hours they arehe or she is likely to require of special education services) (Francis, Koch, Wyatt & Niparko, 1999). Given such remarkable findings, AG Bell's role is to remind both parents and educators that the technology itself is not an end, but a beginning. By far the hardest and most important work occurs during the (re)habilitation period, when the child begins learning to process and interpret sound as efficiently and accurately as possible.
AG Bell's resources on hearing technology are extensive. The brochure, Kids and Cochlear Implants: Getting Connected, addresses a range of issues related to implants, including cochlear implant candidacy, selecting a center, the surgery itself, and (re)habilitation/education issues. Also, AG Bell distributes numerous books that discuss childhood hearing loss and cochlear implant technology; two of the best are Cochlear Implants: Principles and Practices edited by John Niparko, M.D. and colleagues, and Cochlear Implants for Kids by Warren Estabrooks, M.Ed., Cert. AVT. For hearing aid users, AG Bell's brochure titled What are Hearing Aids provides a detailed introduction to this technology. In addition, the book Acoustics for Audiologists offers a rich source of information on the acoustics principles that underlie the design and fitting of hearing aids while Counseling for Hearing Aid Fittings by Robert W. Sweetow, Ph.D., discusses how best to match technology to the needs of patients.
For children who are mainstreamed, parents speak of the need for improved classroom acoustics paired with appropriate technology in the classroom—FM systems, soundfield systems, and captioning. AG Bell has been an active and vocal voice in the push for these and other educational supports, such as the adoption of classroom acoustics standards. Recently, AG Bell hired an attorney specializing in disability rights law to act as a Children's Rights Advocate and provide strong support for these issues at the federal level. Mainstream teachers can learn more about these issues in the brochure How to Have a Winning Year Teaching Your Student with Hearing Loss, while parents and professionals find the booklet titled A Great Idea: IDEA, the IEP Process and Your Child helpful. In addition, the AG Bell-published book, IDEA Advocacy for Children who are Deaf or Hard of Hearing by Bonnie Poitras Tucker, J.D., proves an outstanding resource.
AG Bell's professional members emphasize the need to stay current with therapeutic and technological advances. The association's scholarly journal, The Volta Review, publishes the latest research related to pediatric hearing loss. A recent monograph, edited by Christine Yoshinaga-Itano, Ph.D., CCC-A, C.E.D., and Allison L. Sedey, Ph.D., CCC-A/SLP, explored the topics of language, speech and social-emotional development of children with hearing loss. Upcoming monographs will address classroom acoustics, cochlear implants, and the genetics of hearing loss. In addition, AG Bell is hosting The Human Genome Project and Hearing Loss, a conference exploring the link between genetics and deafness in the summer of 2001. The program will kick off with a keynote from Francis Collins, M.D., Ph.D., director of the NIH Human Genome Institute, and will continue with presentations from seven leading scientists in the field, including James Battey, M.D., Ph.D., director of the NIH National Institute on Deafness and Other Communication Disorders.
Advocacy is another important role that AG Bell fulfills on behalf of members. From the organization's national headquarters in Washington, DC, AG Bell partners with federal agencies on issues affecting people with hearing loss while our nationwide chapter network works aggressively at the grassroots level. AG Bell's successes in this area to date have been astounding: our Oregon, Maryland, Indiana, and Georgia chapters were all integral to the passing of early identification legislation in their respective states. In addition, local chapters facilitate positive interactions between families and the professionals who serve them. Often these meetings take the form of statewide workshops and conferences focusing on the needs of children with hearing loss.
Through a nationwide leadership conference series for young people, AG Bell directly serves one of its most important constituencies: teens and college students with hearing loss. Leadership Opportunities for Teens (LOFT) and Leadership Adventure Enrichment Adventure Program (LEAP) are two programs designed to develop leadership skills in young adults. Both programs work to instill a sense of pride, self-confidence, and teamwork while also including sessions on self-advocacy skills and conflict resolution techniques. For young adults with hearing loss who will spend much of their lives educating others about their needs, these skills are invaluable. One parent wrote us a letter to emphasize how important LOFT was to her son: 'Thank you for LOFT. My son came home kind of a different person, with a better understanding of who he is and where he stands, with more self-confidence and a feeling that he can change something in this world. Needless to say, getting more than twenty new friends was a very exciting part of the experience, too. Good job.'
AG Bell also has plans in the works to introduce a mentoring program for children with hearing loss. This program, currently in the planning stages, will include one-on-one and group mentoring components. By including both approaches, AG Bell hopes to facilitate the development of close role model relationships while also providing children with the opportunity to build a social support network.
Finally, iInternet technology has revolutionized how AG Bell interacts with and supports members. Via the wWeb, members and friends can download informational brochures, conference registrations, and the latest legislative news. Pertinent articles—like High Tech Hearing Aids: Are They Right for Your Child?—reprinted from our bimonthly magazine, Volta Voices, are available for a quick read online. Information about AG Bell's extensive financial aid programs can be downloaded in seconds, along with information about other sources of financial support for children with hearing loss. Using the AG Bell list-serve, BabbleeOn, parents and professionals can establish an open dialogue, sharing information, ideas and , expertise. This medium is also used to alert members to opportunities where they can make their voices heard. Most recently, we sent our members a news alert urging them to communicate with the Federal Communications Commission about the interference that digital phones cause for people who use hearing technology.
When parents first discover their child has a hearing loss, a new door opens—full of fears, frustrations, hopes and questions. AG Bell's role is to provide both families and professionals with the knowledge and resources necessary to serve that child's best interests. For families, we offer information and support as they chart a path across what, for many, is a foreign landscape. For professionals, we provide superior patient resources and numerous opportunities to engage in continuous learning through our publications, our scholarly journal, and our conferences and workshops. Ultimately, though, we work to help children with hearing loss: Mmay they all know the joy of listening and speaking.
Alexander Graham Bell Association for the Deaf and Hard of Hearing—AG Bell
Voice: 202/337-5220 (voice)
TTY: 202-337-5221
Fax: 202-337-8314
Email: info@agbell.org
Web: www.agbell.org
