UAD Position Statement on Cochlear Implants

The Utah Association of the Deaf (UAD) is an education and advocacy organization committed to promotion, protection, and preservation of the rights and quality of life of deaf and hard of hearing individuals in Utah. The targeted audience for this paper includes parents of deaf children, deaf individuals, medical professionals, and the media.

The UAD recognizes that diversity within the deaf community itself, and within the deaf experience, has not been acknowledged or explained very clearly in the public forum. Deafness is diverse in its origin and history, in the adaptive responses made to it, and in the choices that deaf adults and parents of deaf children continue to make about the ever-increasing range of communication and assistive technology options. Diversity requires mutual respect for individual and/or group differences and choices.

The UAD welcomes all individuals regardless of race, religion, ethnic background, socioeconomic status, cultural orientation, mode of communication, preferred language use, hearing status, educational background, and use of technologies. The UAD also welcomes deaf, hard of hearing and hearing family members, educators, and other professionals serving deaf and hard of hearing children and adults.

The UAD subscribes to the wellness model upon which the physical and psychosocial integrity of deaf children and adults is based. The general public needs information about the lives of the vast majority of deaf and hard of hearing individuals who have achieved optimal adjustments in all phases of life, have well-integrated and healthy personalities, and have attained self-actualizing levels of functioning, all with or without the benefits of hearing aids, cochlear implants, and other assistive devices.

The UAD recognizes all technological advancements with the potential to foster, enhance, and improve the quality of life of all deaf and hard of hearing persons. During the past three decades, technological developments such as closed captioning, email and the Internet, two-way pagers, text telephones, telecommunications relay services, video interpreting services, visual alerting devices, vibro-tactile devices, hearing aids, amplification devices, audio loop and listening systems have had an important role in leveling the playing field. The role of the cochlear implant in this regard is evolving and will certainly change in the future. Cochlear implants are not appropriate for all deaf and hard of hearing children and adults. Cochlear implantation is a technology that represents a tool to be used in some forms of communication, and not a cure for deafness. Cochlear implants provide sensitive hearing, but do not, by themselves, impart the ability to understand spoken language through listening alone. In addition, they do not guarantee the development of cognition or reduce the benefit of emphasis on parallel visual language and literacy development.

The UAD recognizes the rights of parents to make informed choices for their deaf and hard of hearing children, respects their choice to use cochlear implants and all other assistive devices, and strongly supports the development of the whole child and of language and literacy. Parents have the right to know about and understand the various options available, including all factors that might impact development. While there are some successes with implants, success stories should not be over-generalized to every individual.

Rationale (back to top)
The focus of the 2000 UAD position statement on cochlear implants is on preserving and promoting the psychosocial integrity of deaf and hard of hearing children and adults. The adverse effects of inflammatory statements about the deaf population of this country must be addressed. Many within the medical profession continue to view deafness essentially as a disability and an abnormality and believe that deaf and hard of hearing individuals need to be "fixed" by cochlear implants. This pathological view must be challenged and corrected by greater exposure to and interaction with well-adjusted and successful deaf and hard of hearing individuals.

The media often describe deafness in a negative light, portraying deaf and hard of hearing children and adults as handicapped and second-class citizens in need of being "fixed" with cochlear implants. There is little or no portrayal of successful, well adjusted deaf and hard of hearing children and adults without implants. A major reason implantation and oral language training have been pursued so aggressively by the media, the medical profession, and parents is not simply because of the hoped-for benefits that come with being able to hear in a predominantly hearing society but more because of the perceived burdens associated with being deaf.

Because cochlear implant technology continues to evolve, to receive mainstream acceptance, and to be acknowledged as part of today's reality, it is urgent to be aware of and responsive to the historical treatment of deaf persons. This perspective makes it possible to provide more realistic guidelines for parents of deaf and hard of hearing children and for pre-lingually and post-lingually deafened adults.

Wellness Model (back to top)
Many deaf and hard of hearing people straddle the "deaf and hearing worlds" and function successfully in both. There are many people with implants who use sign language and continue to be active members of the deaf community and who ascribe to deaf culture and heritage. There are many deaf and hard of hearing individuals, with and without implants, who are high-achieving professionals, talented in every imaginable career field. They, too, are successfully effective parents, raising well-adjusted deaf, hard of hearing and hearing children. As citizens, they continue to make contributions to improve the quality of life for society at large. Deaf and hard of hearing individuals throughout the ages have demonstrated psychological strength and social skills when surviving and overcoming society's misconceptions, prejudices, and discriminatory attitudes and behaviors, thus attesting to their resilience, intelligence, and integrity.

Given the general lack of awareness about the reality of the wellness model, the UAD strongly urges physicians, audiologists, and allied professionals to refer parents to qualified experts in deafness and to other appropriate resources so that parents can make fully informed decisions--that is, decisions that incorporate far more than just the medical-surgical. Such decisions involve language preferences and usage, educational placement and training opportunities, psychological and social development, and the use of technological devices and aids.

The Cochlear Implant (back to top)
The most basic aspect of the cochlear implant is to help the user perceive sound, i.e., the sensation of sound that is transmitted past the damaged cochlea to the brain. In this strictly sensorineural manner, the implant works: the sensation of sound is delivered to the brain. The stated goal of the implant is for it to function as a tool to enable deaf children to develop language based on spoken communication.

Cochlear implants do not eliminate deafness. An implant is not a "cure" and an implanted individual is still deaf. Cochlear implants may destroy what remaining hearing an individual may have. Therefore, if the deaf or hard of hearing child or adult later prefers to use an external hearing aid, that choice may be removed.

Unlike post-lingually deafened children or adults who have had prior experience with sound comprehension, a pre-lingually deafened child or adult does not have the auditory foundation that makes learning a spoken language easy. The situation for those progressively deafened or suddenly deafened later in life is different. Although the implant's signals to the brain are less refined than those provided by an intact cochlea, an individual who is accustomed to receiving signals about sound can fill in certain gaps from memory. While the implant may work quite well for post-lingually deafened individuals, this result just cannot be generalized to pre-lingually deafened children for whom spoken language development is an arduous process, requiring long-term commitment by parents, educators, and support service providers, with no guarantee that the desired goal will be achieved.

Parents (back to top)
Parents face challenges when their child is born deaf or becomes deaf. At least ninety percent of deaf and hard of hearing children are born to hearing parents who usually want their children to be like themselves, to understand sound, to use their voices and verbally express their thoughts through spoken language, and to hear the voices and spoken language of those around them.

However, language and communication are not the same as speech, nor should the ability to speak and/or hear be equated with intelligence, a sense of well-being and lifelong success. Communication and cognition are vital ingredients of every child's development, regardless of the mode in which it is expressed, i.e., visual or auditory.

Despite the pathological view of deafness held by many within the medical profession, parents would benefit by seeking out opportunities to meet and get to know successful deaf and hard of hearing children and adults who are fluent in sign language and English, both with and without implants. The UAD encourages parents and deaf adults to research other options besides implantation. If implantation is the option of choice, parents should obtain all information about the surgical procedure, surgical risks, post-surgical auditory and speech training requirements, and potential benefits and limitations so as to make informed decisions.

Cochlear implant surgery is a beginning, not an end. The surgery decision represents the beginning of a process that involves a long-term, and likely, life-long commitment to auditory training, rehabilitation, acquisition of spoken and visual language skills, follow-up, and possibly additional surgeries. Whatever choices parents make, the primary goal should be to focus on the "whole child" and early language development/literacy and cognitive development. The absence of visual language opportunities can result in developmental delays that can be extremely difficult to reverse. Since the first six years are critical for language acquisition and usage, concurrent acquisition of visual and written language skills should be stressed.

Further improvements to cochlear implant technology and greater experience with educating and supporting pre-lingually deafened children and adults may later result in better outcomes for both of these populations than are achieved at present. In the meantime, though, parents of deaf and hard of hearing children need to be aware that a decision to forego implantation for their children does not condemn their children to a world of meaningless silence. Regardless of whether or not a deaf or hard of hearing child receives an implant, the child will function within both the hearing and the deaf communities. For these reasons, parents of pre-lingually deaf children presently have a reasonable basis upon which to decline implantation for their child. Parents must feel comfortable with their decision, whether they choose implantation or not.

Once parents have arrived at a decision, they want their decision to be validated. They seek reassurances often solely from within the medical and professional hearing health care community. This is a serious and major concern to the NAD. By releasing this position statement, the NAD seeks to alert, educate, and inform parents about deafness and the deaf community.

Recommendations

The UAD hereby makes the following recommendations for action:

Professional Training (back to top)
Medical professionals have historically been the first point of contact for parents of deaf children. Their expertise is valuable but is primarily limited only to their medical areas of expertise. They should not be viewed as, nor should they function as, experts with regard to larger issues such as the educational, psychological, social, and linguistic needs of the deaf child. Medical professionals may be experts regarding the mysteries of the inner ear, but they are not experts regarding the inner lives of deaf children and adults. Psychological, social, educational, cultural and communication aspects of deafness, including the wellness model, must be a significant part of every medical school curriculum, especially within the specialty of otolaryngology. In-service training programs should be implemented for all interdisciplinary staff at cochlear implant centers that would include guidance and counseling methods with parents of deaf children and adults considering cochlear implants. These training programs should be conducted by professional counselors who are trained, qualified, and competent to work and communicate with deaf and hard of hearing children and adults and their families.

Early Assessment of Hearing Aid Benefit (back to top)
It is widely understood and accepted that a trial period of hearing aid use is necessary prior to cochlear implantation. Advanced digital hearing aids should be explored. The NAD encourages that this effort be earnest and of appropriate duration for adequate assessment by objective testing and skilled observation of behaviors and communication skills. This assessment is complicated by the child's lack of prior auditory experience, and inability to communicate what s/he is hearing. The length of this trial period will vary with the individual. Further research by the medical and educational communities regarding objective hearing assessment and hearing aid trials is strongly encouraged.

Cochlear Implant Team (back to top)
Candidacy assessment and surgery must be performed in a medical setting that has a close working relationship with a team of professionals that will provide ongoing long-term support to implant recipients. To be a responsible implant center, caution must be taken when describing the potential benefits of implantation, including risks, limitations, and long-term implications. Parents of deaf children and adults must be assisted in developing realistic and appropriate expectations. Critical to both pediatric and adult cochlear implantation and the long-range medical, audiological, psychological, social, emotional, educational, and vocational adjustment is access to implant centers fully complemented by an interdisciplinary staff, including rehabilitation specialists, psychologists and counselors. Implant center personnel must also work with and involve deafness professionals in education and in the helping professions. It takes a coordinated team of specialists, parents, educators and counselors to raise an implanted child and to support an implanted adult over an extended period of time. The implant team is also morally obligated to recognize when the implant experience has been unsuccessful and provide alternate strategies for language training.

Habilitation (back to top)
An essential component of the cochlear implant process is habilitation. Parents and professionals must make a long-term commitment to integrating listening strategies throughout the child's day at home and at school. It is important to recognize that a newly implanted child is unable to understand spoken language through listening alone. Therefore parents and professionals should continue to use sign language to ensure age-appropriate psychological, social, cognitive, and language development.

Insurance Coverage (back to top)
The UAD recommends that medical insurance carriers also provide fair and equitable coverage for hearing aid devices and associated support services.

Media (back to top)
Reporters, journalists, anchors and directors of newspapers, television networks and film are encouraged to research and prepare their material more carefully and without bias. There is a serious need for a more balanced approach to fact-finding and reporting.

Research (back to top)
Longitudinal research is critically needed, including a more thorough analysis of those for whom the implant is not working. Future research should involve highly controlled, manufacturer-independent and unbiased research on the long-term outcomes of childhood implants on auditory and communicative development, academic and intellectual development and achievement, psychological, social and emotional adjustment, and interpersonal relationship functioning. Comparative research on children without implants receiving parallel support services should also be conducted, especially those for whom sign language is the primary form of communication. Research findings relative to children with and without cochlear implants in educated lay terms must be made available and disseminated to deaf individuals, to parents of implanted children, to those in the helping professions, and to those contemplating implants.

Parents (back to top)
The UAD knows that parents love and care deeply about their deaf children. Since the decision to perform implant surgery on the deaf child is made for the child, it is necessary for parents to become educated about cochlear implants-- the potential benefits, the risks, and all the issues that they entail. During this critical education process, parents have both the need and the right to receive unbiased information about the pros and cons of cochlear implants and related matters. The NAD knows that parents want to make informed decisions. Parents also would benefit by opportunities to interact with successful deaf and hard of hearing adults, as well as with parents of deaf and hard of hearing children.

Deafness is irreversible. Even with the implant and increased sound perception, the child is still deaf. Cochlear implants are not a cure for deafness. The most serious parental responsibility from the very beginning is total commitment to, and involvement with, their child's overall development and well-being. Throughout the developmental years, the deaf child -- implanted or not, mainstreamed or not --should receive education in deaf studies, including deaf heritage, history of deafness and deaf people, particularly stories and accounts of deaf people who have succeeded in many areas of life.

Support Services (back to top)
Parents must understand that, after suitability testing and the decision-making process, the actual surgical procedure is just the beginning-- a prelude to a lifetime proposition for the child and years of commitment by the parents. Implanted children are still deaf and will continue to require educational, psychological, audiological assessment, auditory and speech training, and language support services for a long period of time. Services for families and children should be provided in a manner that is consistent with standards set by the Individuals with Disabilities Education Act (IDEA), with focus on the whole child and the family. It is imperative that psychological support be available, including counseling services. Such services are to be available throughout the child's developmental years, often until adulthood.

Visual Environment (back to top)
The NAD has always and continues to support and endorse innovative educational programming for deaf children, implanted or not. Such programming should actively support the auditory and speech skills of children in a dynamic and interactive visual environment that utilizes sign language and English. In closing, the NAD asserts that diversity in communication modes and cultures is our inherent strength, and that mutual respect and cooperation between deaf, hard of hearing, and hearing individuals ultimately benefit us all.

Approved by UAD Board on June 8, 2002.
Source: NAD's position paper (click here to view)