The Decision-Making Process

Getting Started	What is a CI?	Candidacy	Performance
Decision Making	Process	Insurance	Surgery
Education	Communication	Sign Language	Deaf Community
Speech Processor	Listening	Resources	Versión en Español

By Debra Nussbaum, M.A., CCC-A

For more information about factors in the decision making process, see: American Society for Deaf Children "Snapshot" on Decision Making (PDF) American Society for Deaf Children "Snapshot" on Cochlear Implants (PDF) Chute, P., & Nevins, M. E. (2002). The parent's guide to cochlear implants. Washington, DC: Gallaudet University Press. National Association For the Deaf: Position Paper on Cochlear Implants

Families arrive at the point of considering a cochlear implant at various stages in a child's development and with varied degrees of information regarding the implant and expected outcomes. Some families have extensively researched cochlear implants and understand the level of commitment involved in the process and the range of benefits that may be obtained from an implant. Others arrive at the decision-making process with limited information and unclear expectations regarding the "miracles" of this technology. As professionals counsel families, and families make decisions about whether or not a cochlear implant is the right choice, the following considerations should be kept in mind.

Realistic Expectations

It is important for families to be realistic regarding their expected outcomes from cochlear implants. While the media often portrays cochlear implants as a "cure" for deafness, those directly involved in the educational process with implanted children are keenly aware of how individualized the outcomes may be for each implanted child.

For families considering the option of a cochlear implant for their child, it is important to acknowledge that although a cochlear implant provides an opportunity for a deaf child to develop spoken language skills, it is not a guarantee. While a cochlear implant provides the ability to "hear" sounds, it does not insure that a child will function as a "hearing" child. Deaf children present varied and wide-ranging characteristics related to their age, history, progress, and development that will impact on their degree of success with a cochlear implant. 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 realistic about the range of possible outcomes for any given child.

For more information: Setting Appropriate Expectations and Communcation Goals Auditory Benchmarks for Kids 1 To 4 Years

Level of Commitment

Before deciding to pursue a cochlear implant, families need to be clear about 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 ready to frequently travel to implant centers that are sometimes quite a distance away from home, necessitating time off from work and other home responsibilities. The following questions should be asked of the implant center so that the time commitment required for implantation can be taken into consideration in the decision-making process:

• What medical appointments or other associated evaluations will be necessary prior to determination of candidacy?

• What is the policy regarding trial use of hearing aids prior to cochlear implantation?

• What is the protocol for mapping appointments post-implantation?

• What is the protocol for participation in an auditory and speech training program both pre-implantation and post-implantation?

An important issue for consideration is the amount of time and additional expense that may be involved in facilitating development of listening and speech skills following cochlear implantation. Many hospital implant centers require a commitment to participate in training sessions provided through the hospital implant center. A typical expectation from the hospital implant center may be for the child to attend weekly sessions for at least one year. Some hospital programs may not provide on-site or satellite-site training, however, they collaborate with the child's school program to schedule the necessary training. Informally, families of implant users report that private auditory and speech habilitation training at least once a week (in addition to what is provided by the hospital implant center and/or school) is beneficial.

Regardless of where the training is obtained, insurance companies are inconsistent in the level of payment for these services that may average around $75 to $100 per hour. While obtaining sufficient training to help a child actualize benefit from their implant, it is important to be cautious not to schedule too much training at the expense of allowing a child's participation in other recreational activities (each family will need to be the judge of this!).

It is also important for families to understand their responsibility in facilitating spoken language development and use at home. While auditory and speech training sessions provided by professionals are beneficial in getting children on track, providing opportunities for a child to "successfully listen" at home requires family members to understand the auditory and speech training process. While families need to be cautious in maintaining their role as parents and not go overboard in becoming "trainers," it is important that they become natural facilitators of language, so newly developing skills can be incorporated in the child's daily life (see Training the Ear to Listen).

Another issue to consider as a commitment is made is some of the additional financial costs, outside of the surgery, that may be incurred. The cost of batteries and replacement parts can add up quickly and are not often covered by insurance. As discussed in The Parent's Guide to Cochlear Implants, "Battery life varies with the type of speech processing program, the amount of wear time, and the volume settings on the processor. Certain speech processing programs require larger amounts of power. For the body processors, average battery life is approximately twelve to fifteen hours if using rechargeables, and almost twenty-four hours if using alkaline. For BTE speech processors, battery life varies greatly among devices and within a particular device. It is best to discuss the issue of battery life with the implant team."

For more information about parts/accessories see: Advanced Bionics' products Cochlear Corporation's products MED-EL's products

In addition, the external equipment parts may require replacement from loss or wear and tear. (i.e, cost of cords, headpieces/microphones). It may also be necessary to purchase additional assistive devices to enhance listening through a cochlear implant such as extra external microphones, TV/media connectors, and FM systems. Although the parts and devices may be small, they can be expensive and are rarely covered by insurance.

Looking at the Whole Deaf Child

The cochlear implant is one part of a deaf child. It is a tool he or she will use to access sound. Efforts focused on the end result of making the child a "spoken language communicator" should be kept in perspective in relation to the needs of the child in all areas of development. As decisions are made regarding cochlear implantation, the following should be kept in mind:

• the amount of time spent on auditory and speech training should be in proportion to the other activities in a child's life;

• if a child has developmental, learning, or social/emotional challenges separate from hearing loss, the cochlear implant will not resolve these issues; and

• for children obtaining cochlear implants during their elementary, middle school, or high school years, it is important to balance the focus on spoken language development within the context of considering the child's need to progress academically in a timely fashion.

Including Older Students

Assure that students who are old enough are included in understanding all components of the cochlear implantation process as well as the expected outcomes given their age and previous listening experiences. If the cochlear implant is to be beneficial, it is important that the older child be motivated to participate in the entire process. Keep the following in mind related to keeping older students involved:

• it is important for students to have the opportunity to share their feelings in a safe environment, and

• it is important to acknowledge that there may be peer pressure and lack of peer understanding regarding cochlear implants. Peer workshops on the topic of implants may be beneficial.

For more information, see: Teens and Cochlear Implants.

Gathering Information

As information is gathered from a variety of sources and perspectives, the following should be kept in mind:

• A cochlear implant is not for every deaf child. Families may come to the decision not to obtain a cochlear implant for a variety of valid reasons including:
  • the belief that a cochlear implant will not significantly improve their child's quality of life at a level that leads them to want to consider surgical intervention;
  • the belief that other language, communication, and technology options will effectively meet their child's language, cognitive, social, and life success needs;
  • the knowledge that their child is past the age in which spoken language use will be a realistic outcome from cochlear implantation; or
  • their religious beliefs.

• Be cautious of the media portrayal of cochlear implants. Remember that success stories make good news. In addition, the stories in the news often involve a child in the beginning stages of the process. Yes, it is exciting to see a child as he or she "hears" for the first time. Just remember that much work must follow before sound may become meaningful.

• There are extremists on either end of the spectrum for cochlear implants—those who are strongly for or strongly against them. As families gather information, they must be prepared for both positive and negative feedback, and for both solicited and unsolicited opinions.

• Extended family members and friends may pressure parents to pursue an implant. Families may hear statements such as, "Don't you want to do everything you can for your child?" Family members must be prepared to help others understand the complex decision-making factors that are involved in this choice and that the choice not to implant their child is a legitimate one.