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Cochlear Implant Education Center

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Introduction
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What is a CI?
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Candidacy
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Performance
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Decision Making
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Process
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Insurance
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Surgery
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Education
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Language and Communication
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References
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Deaf Community
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Speech Processor
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Listening
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Resources
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Versión en Español (muy pronto)

 

The Decision-Making Process

Developed by Debra Berlin Nussbaum, Coordinator, Cochlear Implant Education Center, Laurent Clerc National Deaf Education Center

Download the PDF version:

Each family arrives at the point of considering a cochlear implant with varied levels of information regarding the technology itself, the implant process, and expected outcomes. Some families have extensively researched cochlear implants while others arrive at the decision-making process with limited information about the technology and its implications. As cochlear implant technology is investigated for each child, there are a variety of issues that should be included in the decision-making process.

Realistic Expectations
It is important for families to have realistic expectations regarding outcomes from a cochlear implant. While cochlear implants are sometimes portrayed in the media and by some medical and educational professionals as a “cure” for being deaf, many directly involved with children with cochlear implants are keenly aware of how individualized the outcomes may be for each child.

For families considering a cochlear implant for their child, it is important to understand that while most children with a cochlear implant can detect individual speech sounds, this does not automatically guarantee that they will develop the necessary skills to comprehend spoken language for learning. Each child with a cochlear implant will attain his or her own level of auditory functioning depending on a variety of characteristics intrinsic to the child (e.g., etiology of loss, additional disabilities) and/or extrinsic to the child (e.g., habilitation history, educational environment, family support). (See Factors Impacting Performance Outcomes.)

With time and training, some children will develop auditory skill proficiency to a level where they can “listen to learn,” while others may not be able to effectively do so. The latter group nonetheless may benefit from their implant for support and access to sound in other areas (e.g., music enjoyment, enhancement of speechreading, phonemic awareness, and/or environmental sound awareness). Even though not all children will achieve the same level of auditory functioning and spoken language ability with their cochlear implants, the majority will develop skills beyond those they might have developed while using hearing aids. While there may be some degree of benefit for all children obtaining a cochlear implant, it is important for those involved with the decision-making process to be aware of the range of possible outcomes for any given child.

Financial and Time Commitment
As families consider whether or not to pursue a cochlear implant for their child, it is important that they are aware of the time, effort, and possible expenses involved in all components of the implantation process (before, during, and after), and understand that the surgery and initial “hook up” of the implant are only the beginning of a longer road to realizing the full benefits of implantation.

While protocols and time commitments vary among implant centers, families must be prepared to frequently travel to implant centers that are sometimes quite a distance away from home, necessitating time off from work and other home responsibilities. Families should take into consideration the number of medical appointments and other associated evaluations necessary to determine candidacy as well as the protocol for appointments to monitor the programming of the speech processor post-implantation.

Following activation, some hospital implant centers require a commitment to participate in habilitation sessions for a specified time through the hospital implant center. Other hospital implant programs may not provide on-site habilitation services but will refer the child to their school program or a private therapist. Regardless of where the training is provided, insurance companies are inconsistent in the level of reimbursement, if any, for these habilitation services. In addition to the time commitment to participation in professional habilitation services, optimizing benefit from the technology is closely tied to family support in developing and using spoken language in the child’s natural environments. It is important for families to understand their responsibility in the process of developing spoken language within the child’s daily life.

It is important for families to consider the out-of-pocket expenses they may incur throughout the child’s lifetime related to use of cochlear implant technology, including batteries, replacement parts (e.g., cords and headpieces, magnets), additional assistive devices to enhance listening through a cochlear implant such as TV/media connectors, FM systems, and possible replacement or upgrading of the child’s speech processor over time. These items may or may not be covered by insurance.

As families make decisions about choosing a cochlear implant, they should ask their hospital implant center or educational program to connect them with other families who have gone through the process. There are also on-line resources to connect with other families via the cochlear implant manufacturers including:

There are also many blogs and other social media websites and chat rooms chronicling the experiences of families obtaining cochlear implants for their children. Simply type in the keywords “cochlear implant blog” and you will find an extensive list to choose from.

Websites Addressing Language and Communication Considerations

  • Hands & Voices Communicator—The Hands & Voices Communicator is a U.S./international newspaper that has many articles that are relevant to families raising children who are deaf or hard of hearing. It includes stories of families who have “been there” as well as information that may be helpful to both families and professionals.
  • My Baby’s Hearing—This family education website, developed by Boystown National Research Hospital, has three main content sections that include: 1) Hearing and Amplification, 2) Language and Learning, and 3) Parent to Parent. The first major section of My Baby's Hearing is now available in Spanish at www.audiciondelbebe.org.
  • Raising Deaf Kids—The information and resources on hearing loss on this site were developed by the Deafness and Family Communication Center (DFCC) at the Children's Hospital of Philadelphia.
  • Raising and Educating a Deaf Child—On this Rochester Institute of Technology /National Technical Institute for the Deaf website, experts answer questions about choices and controversies faced by families and educators of children who are deaf or hard of hearing.
  • Through Your Child’s Eyes—This DVD, created through the California Department of Education and California State University, Northridge with funding provided by the Annenberg Foundation, shares the benefits of sign language.
  • Building Blocks of Intervention—Produced by the Deaf and Hard of Hearing Program of Children's Hospital Boston, Building Blocks of Intervention is a series of six webinars designed for early intervention specialists as well as parents of young deaf or hard of hearing children.

For more information about family decision making:

Archbold, S., Sach, T., O’Neill, C., Lutman, M., & Gregory, S. (2006). Deciding to have a cochlear implant and subsequent after-care: Parental perspectives. Deafness and Education International, 8(4), 190-206.


Archbold, S., Sach, T., O'Neill, C., Lutman, M., & Gregory, S. (2008). Outcomes from cochlear implantation for child and family: Parental perspectives. Deafness and Education International, 10(3), 120-142.


Archbold, S., & Wheeler, A. (2010). Cochlear implants: Family and young people's perspectives. In M. Marschark & P. Spencer (Eds.), Oxford handbook of deaf studies, language, and education (2nd ed., pp. 226-240). New York: Oxford University Press.


Huttunen, K., & Välimaa, T. (2010). Parents' Views on Changes in Their Child's Communication and Linguistic and Socioemotional Development After Cochlear Implantation. Journal of Deaf Studies and Deaf Education, 15(4), 383.


Hyde, M., Punch, R., & Komesaroff, L. (2010). Coming to a decision about cochlear implantation: Parents making choices for their deaf children. Journal of Deaf Studies and Deaf Education, 15(2), 162-178.
Kermit, P. (2010). Choosing for the child with cochlear implants: A note of precaution. Medicine, Health Care, and Philosophy, 13(2), 157.


Marschark, M., & Hauser, P. (2012). How deaf children learn: What parents and teachers need to know. New York: Oxford University Press, Inc.


Raising and Educating a Deaf Child: Cochlear Implants and Hearing Aids


Revised May 2012