Resources for Family Members with Deaf/Hard-of-Hearing Relatives: Definitions

► ADA (Americans with Disabilities Act) This law was written mostly for public places and work environments, but it applies to children as well. Education cannot be denied to your baby because of a disability. As your baby becomes older, telephone relays, closed captioning, visual fire alarms and other adaptations need to be in the public places, such as schools, where deaf children go.

► IDEA (Individuals with Disabilities Education Act) This is a law requiring that children with sensory impairments, such as hearing loss, receive special education services from the time that they are identified, no matter how young they may be. IDEA spells out the requirements of special education services from school districts, including a book that includes all of your rights as parents.

► IFSP (Individual Family Service Plan) In states providing public school services for babies 0 to three years old, the law requires that every family with a baby who is deaf or hard of hearing receive a plan including goals determined by the parents and other team members. These plans are updated every 6 months.

► MDT (Multidisciplinary Team) One person, especially one professional, is not allowed to decide what is right for your baby. Professionals have good information and advice to offer, but a team of adults is more likely to make good decisions than a single person. You are an important member of the team; you can, and should, speak up for your baby. Generally, members of MDT’s agree on the importance of your baby’s needs, and a strong team can be a wonderful support for parents.

► Audiogram An audiogram is a chart that tells you the results of a hearing test given in a soundproof booth by an audiologist. It marks the loudness level at which your baby becomes aware of pure tones or “beeps” at various pitches. As soon as possible, audiologists test each of your baby’s ears separately. Although an audiogram does not tell you everything about how your baby uses sound, it does give the audiologist very important information about fitting the right hearing aids.

► Hearing Aid A hearing aid makes sounds louder. It does not correct hearing in the same way that glasses often correct sight. Different children need different kinds of hearing aids, and get different amounts of benefit from them. For hard of hearing children, and deaf children who have “usable residual hearing”, a hearing aid is a most important piece of equipment.

► Usable Residual Hearing Very few people are completely deaf. Your audiologist can explain to you the ways that your baby can use hearing aids to listen to people speaking and sounds in the environment. Not all babies can use hearing alone to learn speech and language, but for them, there are ways to combine hearing with other types of communication to help your baby take part in the family and the community.

► Cochlear Implant Cochlear implants are a new kind of listening aid. They require surgery and are expensive, although many insurance companies now cover at least part of the cost. They work differently than hearing aids and not everyone can benefit from an implant. The results from using cochlear implants are encouraging, however, for many individuals with specific kinds of hearing loss. Before you consider getting a cochlear implant for your baby, you should probably do research, go through an evaluation, and talk with an implant team.

► Communication Modality Because every baby and every family is different, the decision about which way to communicate (modality) must be made carefully, based on your baby and family’s needs. Sometimes a combination of ways to communicate is the best decision. Any decision will require commitment from you and from the professionals on your baby’s team. The modalities most often used in the United States include:
      Auditory-Verbal (A-V), or the use of only hearing in developing speech and language. If your baby has enough residual hearing, or can use residual hearing well, then early use of auditory/verbal methods can be helpful. Audiograms do not always predict which children will be able to learn enough language through auditory/verbal methods alone.
      Oral/Aural communication, or the use of hearing and speech reading. If your baby has enough usable residual hearing to learn language from listening, then this modality is a good choice. However, your baby will still need good hearing aids, a quiet environment, language stimulation, and help from you and your infant/family specialist in order to develop speech and language.
      Cued Speech, or the use of hand shapes and speech reading to support your baby’s listening. Many sounds look alike on the face and children with limited hearing can become confused. Cued speech is a way of showing English clearly.
      Manually Coded English (MCE), or a way of expressing the English language on the hands. For children with profound hearing loss, MCE can be a good tool for learning English grammar and beginning to read. For long and complicated ideas, MCE is not always the best way to communicate visually; however, many hearing, English speaking parents use MCE with their babies.
      American Sign Language (ASL), or the language of the Deaf Community in the United States. Any idea that can be expressed in English can be completely expressed visually in ASL, so many parents try to give their children the chance to meet people who are fluent in ASL. That way, even very young babies have access to adults and children communicating with each other. However, ASL is hard for hearing parents to learn quickly. 

► Aural Habilitation Aural habilitation is how you and your infant/family specialist help your baby compensate for hearing loss. Teachers of the deaf and hard of hearing, speech language clinicians, audiologists and parents all learn how to help babies listen. Habilitation includes the right hearing aids or cochlear implant, set appropriately for your baby, with new batteries and working parts. Someone must be responsible for checking the hearing devices every day. It also includes teaching your baby to attend to sounds that we would think are very soft, so someone must be aware of limiting extra noise in the environment and calling the baby’s attention to all of the important sounds. Everyone in the family can make speech and sound interesting by staying close to the baby while talking, using funny noise maker toys, and pointing out the sound made by flushing the toilet, the telephone, the doorbell, the vacuum cleaner, and the microwave. Infant/family specialists can provide ideas about other early aural habilitation strategies. When your baby begins school, teachers and clinicians will continue to provide listening learning opportunities and practice.

► Least Restrictive Environment (LRE) IDEA calls for each child to receive services in the least restrictive environment. For children who can hear, even if they have other challenges, this means a supportive program with children who go to public schools, who can provide good language and behavior models. This is called inclusion. Many deaf, or hard of hearing children do very well in inclusive settings. Others have difficulty communicating with other children in a public school program. They can become isolated, lose a chance to communicate with their peers and learn social skills, and miss much of what goes on in the classroom. For many reasons, including the fact that many educational interpreters are not certified, even a deaf child with an interpreter can be frustrated in the classroom. The parent intervention services for you and your baby can help you make educational decisions in the future about what is really the least restrictive school environment for your child.

► Ongoing Assessment An ongoing assessment of your baby’s development is required by IDEA. Especially at the beginning of your parent intervention, when you are finding out about how your baby hears and learns, you and your infant/family specialist need to keep a close watch on how your baby changes. Later, formal assessment, or testing, may happen every year, or even every three years. Now and later, however, someone needs to continually look at your child’s progress, in order to support you in making appropriate decisions.

► Self-Contained Programs Both public schools and state residential or day schools provide programs where deaf children learn with other deaf children, or where they mix with hearing children part of the time, but interact with Deaf adults and peers every day. These programs sometimes provide the LRE, because children can have full access to language, school curriculum and social interaction. Sometimes a child may not be adequately challenged by the curriculum of a self-contained program, and it may not be the LRE for learning. Again, with ongoing assessment, you as parents, with your educators, can make decisions for a specific child, not just once, but over and over as your baby grows into childhood and enters the school years.