HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss TABLE OF CONTENTS Why Did We Write This Resource Guide? 1 When Your Child's Hearing Loss is Identified 5 Who are the Professionals? 9 Understanding Hearing Loss 13 What can go wrong with the hearing system? 14 What types of hearing tests can be done 15 with a newborn or very young child? How is hearing loss measured? 17 What are Your Choices in Communication? 21 American Sign Language (ASL) 23 Auditory-Oral (AO) 24 Auditory-Verbal (AV) 24 Bilingual/Bicultural (Bi-Bi) 25 Cued Speech 26 Simultaneous Communication (SIM-COM) 26 Total Communication (TC) 27 What are Your Choices in Amplification? 28 What is a hearing aid? 28 Do all children with a hearing loss need a 28 hearing aid? When can my child get a hearing aid? 29 Who decides which hearing aid is best? 29 What do hearing aids look like? 30 What kinds of technology do hearing aids use? 32 What other types of hearing aids or devices 33 might be helpful? Parenting the Child Who is Deaf 37 or Hearing Impaired i HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Public Health and Department 41 of Education Resources Glossary 45 Resources for Families and Professionals 51 Georgia 52 Universal Newborn Hearing Screening 55 Contact List National 58 My Contacts 67 Notes 69 ii HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Introduction Why Did We Write This Resource Guide? T his resource guide is written for families of infants and children recently identified with any hearing loss: mild, moderate, severe, profound, bilateral (hearing loss in both ears) or unilateral (hearing loss in one ear only). Most people know very little about hearing loss unless someone else in their family is hearing impaired. This resource guide was written to help parents with their questions and concerns about their child's hearing loss and to help them find resources for services and more information. Outcomes for children with hearing loss are vastly improved in recent years due to major technological advances that make earlier identification and intervention possible. Recent research has proven that infants whose hearing loss is discovered before six months of age and who receive early and appropriate attention to their communication needs have a much better chance of normal language development than do children whose hearing loss is identified later. 1 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss The sooner a family knows about the hearing loss and what the child needs, the better the opportunity for success. You are fortunate to live in Georgia! Georgia has a very real concern for infants and children with hearing loss. Many helpful resources are available, with more developing all the time. In order to get the earliest diagnosis, Georgia launched the Universal Newborn Hearing Screening and Intervention Program in January of 2001. This program encourages all birthing hospitals to screen newborns for hearing loss before the baby goes home. Programs like this give the best chance of finding babies born with hearing loss early enough to make a difference. Once you know your child has a hearing loss, the most important challenge is finding the best ways for you and your child to communicate, and the best ways for him/her to learn language. There is no one "right" way when it comes to finding the service, program or communication method that will lead your child to success. Your child's needs, as well as the needs of your family, will change as your child develops. It's very important to see your efforts as a "workin-progress". Be open to new ideas, and even to changing your approach if necessary. There are many professionals in Georgia who are experts at helping infants and children with hearing loss and their families. 2 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss The sooner a family knows about the hearing loss and what the child needs, the better the opportunity for success. You are fortunate to live in Georgia! 3 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 4 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 1 When Your Child's Hearing Loss is Identified W hen your child is identified with a hearing loss, you will have many questions. "What exactly does this mean?", "What do we do first?", "How much can he/she hear?", "Why my child?" You are not the only parent who feels this way. Hearing loss is the most common disability present at birth in newborns, occurring in about three out of a thousand live births. More than 90% of children who have a hearing loss have parents and families with normal hearing. Ten percent of babies born with hearing loss are born to parents with deafness or hearing loss, and parents of these babies may have different concerns than hearing parents. When your doctor or audiologist says, "Your baby/child has a hearing loss," it may come as a shock to you. 5 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Many babies and children with hearing loss respond to sounds in their surroundings, such as a loud clap, a telephone, a vacuum, or other noise. Moreover, babies can look at someone's face and get cues about communication messages. Babies born with hearing loss do babble and make other baby sounds, even if the hearing loss is severe. But even if you suspected there was a hearing problem, these are hard words to hear! The professionals who evaluate your child's hearing will have recommendations and helpful information for you. You will meet people who can help answer your questions and explain the decisions you will need to make. There is a lot to know and a lot to learn you are about to become very knowledgeable about hearing loss! You can expect to experience some confusion but you can also expect guidance, information, and support from the professionals who will work with you. 6 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss There is a lot to know and a lot to learn you are about to become very knowledgeable about hearing loss! 7 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 8 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 2 Who Are the Professionals? Below are listed some of the types of people who are experienced with hearing loss identification and intervention. Some of these people are medical professionals, some are teachers or advisors, and some are audiologists or speech-language pathologists. Helping your child may take a team of people, but always remember that you, the parents, are the most important members of that team. Here is a brief description of some of the people you may meet. Audiologist An audiologist is the person who will test your child's hearing and who can fit your child with amplification, such as hearing aids, if you so choose. This person will give you a clearer picture of what your child can and/or cannot hear. The audiologist will have a wealth of information, be able to answer questions about your child's hearing loss, and will be able to make recommendations regarding amplification options and available resources. 9 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Not all licensed audiologists have experience with babies and small children, so you want to find one who does. Ear, Nose and Throat (ENT) Physician The ENT physician is a doctor who specializes in ear problems. He or she will answer questions and provide medical or surgical treatments if appropriate to treat your child's hearing loss. If medical or surgical treatment is not recommended for your child, the ENT physician will work with the audiologist if you want to obtain hearing aids for your child, or later a cochlear implant if hearing aids are not successful. Early Intervention (EI) Specialist or Educator The early intervention specialist or educator will help by assessing the needs of your family and describing and linking you to the services available to fill those needs. That person will be in regular contact with you and will be able to discuss various educational and communicative options for you and your child. The EI specialist will provide emotional support and can direct you to resources for financial assistance. Again, you will want to be sure your EI Specialist is knowledgeable about the needs of babies and young children with hearing loss. 10 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Pediatrician/Family Practitioner In addition to providing your child with check-ups, immunizations, and health care, your doctor will make referrals to the audiologist and for early intervention services. They will ensure that your child has thorough and prompt evaluations. Your doctor will also regularly monitor the progress of your child and family. Speech-Language Pathologist A speech-language pathologist is a licensed professional who may help you and your child learn to communicate, whether with speech or another language method. Speech-language pathologists often serve as part of the professional team to give you information on communication and language choices and pathways for you and your child. They may also provide direct therapy services for your child depending on your choices. Once again, don't be reluctant to ask if your speech-language pathologist has experience with children with hearing loss, and if they can use the language method you prefer for your child. Other Parents Parents are also a most important resource. Ask the professionals to help you connect with parent support groups, or simply other parents of a child with hearing loss, who are willing to share their experiences with you. 11 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 12 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 3 Understanding Hearing Loss How do we hear? S ound travels through the air in waves. Sound waves are funneled down the ear canal (the opening we see in the outer ear) and set the eardrum in motion. On the other side of the eardrum are three little bones called the ossicles. When the eardrum vibrates, it causes the ossicles to vibrate. The last ossicle pushes into the inner ear structure called the cochlea. The cochlea is a fluid filled structure and when the last ossicle pushes into it, a wave is created in the fluid. (This is similar to a wave created when you throw a stone into a pond of water.) Inside the cochlea are 20,000 hair cells that sway as the wave of fluid passes by. When these hair cells sway, an electrical reaction occurs that stimulates the auditory nerve and sends information to the brain. This lets us know that we have heard a sound. 13 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss What can go wrong with the hearing system? There are several places in the auditory or hearing system where things can go wrong. If there is damage to the eardrum or bones, or if there is an ear infection, then a conductive hearing loss is created. This type of hearing loss makes sounds muffled or weak. This type of hearing loss often is medically correctable, but sometimes a hearing aid is used to overcome the hearing loss. If there is damage to the hair cells in the cochlea and\or to the auditory nerve of hearing, then a sensorineural hearing loss is created. Loud noise exposure, high fevers, ototoxic medications (medications that may have a toxic affect on the ear), head trauma or aging can cause this type of damage. Some illnesses during pregnancy, problems during birth, or inherited family genes can also cause sensorineural hearing loss. However, a lot of sensorineural hearing losses have no cause that can be clearly identified. This type of hearing loss can make sounds and words seem distorted, as well as muffled or weak. Sensorineural hearing loss is not usually medically correctable. Sometimes there is a combination of conductive and sensorineural hearing loss. This is known as a mixed hearing loss. Remember, hearing loss can occur in one ear or both ears, and the hearing loss can be of a different type in each ear. 14 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss What types of hearing tests can be done with a baby or very young child? There are a number of hearing tests that can help determine how well someone hears. Some tests are objective, meaning they don't require the patient to do anything to let the audiologist know they hear. These tests include Otoacoustic Emissions (OAE) testing, Auditory Brainstem Response (ABR) measures, and certain tests of the middle ear. Other tests are more subjective, meaning the tester has to decide if the patient is responding to a sound. Behavioral observation testing is an example of this method. Otoacoustic Emissions (OAE) testing provides information about the hair cell function in the inner ear or cochlea. The tester will put a small tube in the baby/child's ear that emits a series of soft sounds. The sounds will cause movement of small cells inside the cochlea. When these cells move, they produce a sound that can be picked up by a very sensitive microphone. The sound is then measured and assessed. This test is not painful for the child and takes only a few minutes to complete. Auditory Brainstem Response (ABR) testing provides information about the hearing system beginning at the cochlea and going up the brainstem. The tester will tape a few electrodes on the baby's head. 15 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss These electrodes tape on similarly to Band-Aids. The tester presents a series of sounds to the baby/child's ear through an earphone. The electrodes record the response of the baby/child's brain to those sounds, as the response travels up the brainstem. This test is not painful for the child, but may take an hour or more to complete, depending on the child's age. Your baby/child will a need to be asleep or very still for the test to be accurate. Behavioral observation testing evaluates the entire hearing process. The baby or young child sits in a soundproof booth with a parent or other adult. Sounds are presented through earphones or speakers and the tester watches for any reaction to those sounds from the baby or child. Infant reactions to sounds can range from a startle response to changes in breathing patterns, crying, or any number of other reactions. This is an important test to have but the results should only be interpreted together with results from the other tests described above. For an older child, the audiologist may present sounds to the child through earphones, and have the child indicate whether they heard the sounds by raising their hand or performing a "play" task like dropping a peg in a bucket. 16 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss How is hearing loss measured? Hearing loss is described in terms of type, degree, and shape. The types of losses already have been described briefly: conductive, sensorineural, and mixed. The degree and shape are drawn on a graph called an audiogram. (See page 19). The degree of hearing loss is defined in terms of severity. A mild hearing loss means that soft sounds cannot be heard. For a child, even a mild hearing loss may affect development of communication skills. A moderate hearing loss makes it difficult to hear normal conversation. Someone with a severe hearing loss needs speech to be very loud in order to hear it at all, and a person with a profound hearing loss may only be aware of sounds loud enough to cause a vibration they can feel. Hearing loss can also be described in terms of the shape it makes on the audiogram. Very few hearing loss patterns are flat, meaning the person has the same amount of hearing loss at every pitch (frequency). Most hearing losses worsen for higher pitched sounds. This is called high frequency hearing loss. A person with a high frequency hearing loss misses such speech sounds as /s/, /sh/, /th/, /f/, and /p/. 17 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss These consonant sounds are what give speech its meaning. If you can't tell the difference between these sounds in words like "sat and "fat, the meaning of the sentence may be entirely different. Sometimes people have low frequency hearing loss, meaning their hearing is poorer for lower pitches than it is for higher pitched sounds. A person with a low frequency hearing loss often misses vowel sounds. Both high and low frequency hearing losses can cause difficulty in understanding speech. Each child is an individual, and so the success of each child with language and communication varies. Success may not necessarily be dependent on the type, degree, or shape of the hearing loss. Some children with mild hearing losses are not as successful at communicating as children with profound hearing losses. A child's educational success is influenced by a variety of factors in addition to the hearing loss, such as learning problems, family support, communication choices, other medical problems, educational program availability, and the child's own motivation. 18 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Frequency in Hertz (Hz) 125 -10 0 10 20 30 40 50 60 70 80 90 100 110 250 500 1000 2000 4000 8000 750 1500 3000 5000 An audiogram is a picture of your hearing. The results of your hearing test are recorded on an audiogram. The audiogram to the left demonstrates different sounds and where they would be represented on an audiogram. The banana shaped figure represents the sounds that make up the human voice at normal speaking levels. The softest sound you are able to hear at each pitch is recorded on the audiogram. The softest sound you are able to hear is called your threshold. The audiogram on the right demonstrates different degrees of hearing loss. Frequency in Hertz (Hz) 125 -10 250 500 1000 2000 4000 8000 750 1500 3000 5000 0 10 NORMAL HEARING 20 30 MILD HEARING LOSS 40 50 60 MODERATE HEARING LOSS 70 80 SEVERE HEARING LOSS 90 100 PROFOUND HEARING LOSS 110 19 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 20 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 4 What are Your Choices in Communication I n order to learn language, either sign language or spoken language, constant, frequent, and consistent communication interaction is of the utmost importance. Children will learn to enjoy communication success if the family and those around them are committed to two-way communication (i.e., responding to the child and encouraging the child to respond back). Choosing a communication approach or method for a child with hearing loss takes time, and your first decision may change over time. Family perceptions and values can change as additional knowledge and insight are acquired. Information on all communication approaches should be explored fully. Families are encouraged to be open to all approaches, ask questions, and talk to adults who are deaf and hard of hearing as well as other families with children who use a variety of communication modes. 21 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss When looking at communication options, consider that: O The communication method should promote meaningful, enjoyable communication among the family members. O The communication method should enable everyone in the family to communicate with the child. O The communication method should be in the best interest of the child. The child should be able to use his or her language to influence people and events in the environment, express feelings, ask questions, obtain information and participate in the worlds of imagination and abstract thought. O Other factors to consider are the degree of hearing loss and other disabilities the child may have. O Children often successfully use two or more ways to communicate with family, friends and others. 22 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss The following is a short summary of communication options, methods, and approaches to learning, listed in alphabetical order. American Sign Language (ASL) American Sign Language is a fully developed real language of deaf people with the ability to communicate the same, complete meaning as in spoken language. It is a visual-gestural-spatial language in which the signs, fingerspelling, and movement of the hands, face, and body are all part of the language. ASL is a very comprehensive, structurally complex, rule bound, and full means of communication. ASL can perform, through a visual system, the same range of functions as a spoken language. It has a different grammatical system from English, so one cannot speak English while signing ASL. Language develops through ASL. English is taught as a second language. For the majority of deaf children with deaf parents, ASL is learned from their parents in the same manner as spoken language is acquired by hearing children. 23 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Auditory-Oral (AO) The Auditory-Oral approach promotes communication through spoken language without the use of sign language, for children with all degrees of hearing loss. Spoken language development is based on making the most of the child's remaining hearing through appropriately fit amplification/hearing aids or a cochlear implant. Parents and children learn ways for the child to use listening skills and spoken language through concentrated, systematic, language-based interactions throughout the child's day. Children also learn to make use of visual cues such as speech reading or looking at the face or body to help with understanding when the auditory signal is unclear. Language is encouraged by involvement as much as possible with other children who use listening and speaking, whether hearing children or children with hearing loss. Auditory-Verbal (A-V) The Auditory-Verbal approach focuses on spoken language development through listening, for children with all degrees of hearing impairment. This approach is also based on making the most of the child's remaining hearing through hearing aids or a cochlear implant. 24 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Through individualized, one-on-one therapy with an A-V clinician, the family learns how to create an environment in which the child learns to listen and process spoken language from auditory information, and speech is taught by utilizing the natural stages of typical child auditory, speech, and language development. Language develops by encouraging the child to become independent with their speaking and communication skills in the same environments as their hearing friends and relatives. Bilingual/Bicultural (Bi-Bi) Bilingual/Bicultural communication views American deaf children as having two languages (American Sign Language and English) and two or more cultures (Deaf culture, mainstream American culture, and family heritage). A language base in ASL, together with finger spelling, is used to build and develop competency in English. English in the classroom emphasizes the printed word (reading, writing, and typing). Spoken English may be supported for students who demonstrate natural tendencies and potential in this area in a natural way, but is not pursued if judged to be at the expense of general language development. 25 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Cued Speech Cued Speech is a method of using a system of hand cues to allow a person who is deaf or hard of hearing to see every spoken syllable that a hearing person hears. Cued Speech is speech reading supplemented by clear visual hand cues for sounds that are particularly difficult for the hearing impaired child to detect. This communication mode (not a separate language or philosophy) utilizes, for English, eight hand shapes to represent the consonant sounds in spoken language and four positions around the mouth to represent the vowel sounds. Simultaneous Communication (Sim-Com) Sim-Com uses both speech and sign simultaneously. A variety of manually coded English systems (e.g., Signing Exact English, Signed English, Conceptually Accurate Signed English, Pidgin Sign) might be used to provide visual communication while English is spoken along with the signs. These sign systems, unlike ASL, follow English word order and are used to support the acquisition of spoken and written English. 26 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Total Communication (TC) For Total Communication a variety of modes are used individually or together to communicate depending on the needs of the student. A teacher or parent may use speech, aural aids, speech reading, mime, acting, pictures, finger-spelling, Sim-Com, and/or American Sign Language to learn language skills. Establishing clear communication becomes more important than sticking with one communication method. 27 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss What Are Your Choices in Amplification? What is a hearing aid? A hearing aid is a device for the ear that makes sounds louder for the range of a particular hearing loss. The goal is to provide the ability to hear speech and environmental sounds at a comfortable level. If learning speech or responding to sounds in the environment is a communication goal, either hearing aid(s) or a cochlear implant would provide the necessary amplification. Some organizations and facilities may loan hearing aids until benefit from them can be determined. Do all children with hearing loss need a hearing aid? No. Some hearing losses can be corrected by medical or surgical treatment (for example, losses caused by ear infections or objects or excess wax blocking the ear canal). Once treatment has been provided, hearing should be retested to see if it has returned to normal. With hearing losses that are permanent and not medically correctable, amplification is an option that should be considered. 28 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss For children with unilateral hearing loss (hearing loss in only one ear), parents may or may not elect to get a hearing aid for the child. This depends on many factors such as the child, the parent, the hearing acuity or ability of the other ear, and the child's listening environment. Some children with profound hearing loss in both ears get very little benefit from even the strongest hearing aids. After a trial period with hearing aids, families of these children may decide to pursue a cochlear implant for their child. When can my child get a hearing aid? Most newborns have their hearing tested at birth and can be fitted with hearing aids within a few weeks after a hearing loss is confirmed. Research tells us that fitting a hearing aid as soon as the hearing loss is diagnosed helps to minimize the effect of the hearing loss on spoken language development. Who decides which hearing aid is best? Parents and the child's audiologist should come to a careful decision regarding amplification after consideration of the infant or child's individual needs, including the characteristics of the hearing loss, available technology and financial resources. Hearing aids are prescribed to assure the best possible fit with the information available. 29 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss As more specific information about the hearing loss is obtained, the hearing aids will be adjusted. The audiologist will perform tests with the hearing aids on the child to further confirm the fitting benefit. The child's ENT will provide a medical clearance statement to permit the fitting of hearing aids on a child. What do hearing aids look like? Every hearing aid has a microphone (where the sound enters the aid), an amplifier to make sounds louder, a receiver (where the sound exits the aid and goes down the child's ear canal), and a battery. The type and size of the hearing aid depends on the type and severity of the loss, as well as the age of the child. The cost of hearing aids range greatly. An audiologist can discuss specifically how each type of hearing aid works and then provide help or training on how to use a hearing aid successfully. 30 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Hearing aids come in several sizes and styles, and your audiologist will discuss the pros and cons of each for your child. The most commonly recommended style of hearing aid for a young child is behind-the-ear (BTE) which includes both a hearing aid that fits behind the ear and an earmold made to fit the child's ear. Other styles include body-style, in-the-ear (ITE), in-the-canal (ITC), and completely in-the-canal (CIC) aids, (not pictured). 31 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss What kinds of technology do hearing aids use? There are several different technologies available for hearing aids, such as analog, digital, and programmable. OAnalog hearing aids (often called "traditional" hearing aids) have screw-type controls that can be adjusted to modify the hearing aid output. The output of the hearing aid is in an analog, rather than digital form, with the difference being much like the difference in sound between a regular and digital TV reception. ODigital hearing aids have an internal microchip. These hearing aids convert the sound that comes in into a digital signal. This process allows for more complex adjustments to be made with less distortion to the sound from the hearing aid. OProgrammable hearing aids also have an internal microchip that can be adjusted for more precise sound adjustment than is possible in a non-programmable aid. Programmable hearing aids may also have multiple memories that can store different hearing aid responses for varied listening environments. Both analog and digital hearing aids may be programmable. 32 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss What other types of hearing aids or devices might be helpful? Some children with a conductive hearing loss, and/or malformed or missing outer ears that cannot be medically or surgically corrected, may use bone conduction hearing aids. These are a specially adapted version of behind-the-ear or body style of hearing aids. Transpositional hearing aids or vibro-tactile hearing aids are specialized hearing devices that may be helpful for some children with profound deafness who do not benefit from traditional types of hearing aids. Auditory trainers and/or FM systems may be useful to a child in addition to hearing aids. The child may wear a headset-type or an attachment to their hearing aid that picks up sounds presented into a microphone worn by the parent or teacher. This allows the parent's or teacher's voice to be directly sent to the child's ears, thereby eliminating the competition with background noise and giving the hearing impaired child the benefit of a clear over-riding auditory signal. 33 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss A cochlear implant is a device that consists of parts that are surgically implanted in the head and parts that are worn outside on the body or head. Children with severe to profound hearing loss who do not benefit from hearing aids may be considered for a cochlear implant. There are also other devices, called assistive listening devices, which can be used by older children in specific situations. Amplifier telephones and television infrared systems are two examples. An amplifier telephone will amplify voices coming across the phone. Infrared television systems help amplify sounds coming over the television. Finally, ALL hearing aids and devices have limitations. Hearing aids cannot cure a hearing loss. They cannot guarantee hearing at all frequencies across the frequency range. Hearing aids cannot make sounds more clear if the inner ear (cochlea) is damaged and distorting these sounds. They cannot completely separate speech from background noise. Hearing aids will enhance a child's life and development when a close working relationship exists between the parents, their child, the audiologist, and the intervention team. 34 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Love your child and communicate with them constantly. Regardless of the mode of communication you choose to use, constantly stimulate your child by using that mode to promote language development. 35 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 36 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 5 Parenting the Child Who is Deaf or Hard of Hearing R esearch suggests that there is no difference in bonding between infants and parents of deaf or hard of hearing children and that of normal hearing children. Like any child, a child who is deaf or hard of hearing will need three types of inner resources to become a self-disciplined person: good feelings about themselves and others, an understanding of right and wrong, and a variety of alternatives for solving problems. You can help develop these inner resources in your child by doing what you already know how to do: BE A PARENT. Love your child and communicate with them constantly. Regardless of the mode of communication you choose to use, constantly stimulate your child by using that mode to promote language development. Get your child's attention first and try to reduce any background noise or activity to give your child the best chance at paying attention and understanding your communication. Try not to be frustrated at having to repeat sometimes you will need to! (If you repeat and your child still does not understand, try saying it a different way). 37 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss For a child learning to listen with amplification, you will need to help your child realize that everything makes sound and explain when hearing people respond differently to different sounds. Like all children, your child will need the predictability of routines and schedules. This provides them with a sense of stability and security. Similarly, be consistent with messages, actions, and reactions. Try to understand that all children need discipline and positive reinforcement. Be sure to set sensible limits and boundaries as well as appropriate and reasonable punishments. Try to understand problem behavior and defuse it before it gets out of control. Anticipate the kinds of circumstances that lead to misbehavior and take the opportunity to teach good problem solving skills. Try not to overreact and don't be afraid to ask for help if you feel you need it. Raising any child is a long, challenging, and rewarding process. All parents experience their ups and downs. Be patient with your child and also with yourself, and, above all, have fun! 38 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss In the state of Georgia there are two public agencies that can provide you with information and assistance regarding your options and available service providers: The Georgia Department of Human Resources, Division of Public Health and the Georgia Department of Education. 39 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss 40 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Chapter 6 Public Health and Department of Education Resources Division of Public Health W ithin the Division of Public Health exists the statewide linkage system to all of Georgia's public health programs for children birth to age 5. This system, called Children 1st, enables families to apply once and receive referrals to all programs that might be helpful, such as the Babies Can't Wait (BCW) Early Intervention Program, Children's Medical Services (CMS), and Georgia PINES (see below). Children 1st can link you to these programs as well as other public and private service providers in your community and throughout the state. See Georgia Resources for contact information. A statewide contact list for the Children 1st Coordinator can be found on the Children 1st webpage: http://health.state.ga.us/programs/childrenfirst/ Babies Can't Wait (BCW) is an educational program for infants and toddlers, birth to age three, who are experiencing or who are expected to experience developmental delays. 41 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Children with severe or profound bilateral hearing loss are automatically eligible for this program. Through testing, eligibility will be determined for children with lesser degrees of hearing loss. There is no income eligibility for this program but services are provided based on a sliding fee scale. BCW can offer a variety of resources for families of infants and children with hearing loss or deafness including assistance with hearing aids, other assistive technology devices and services, service coordination, speech and language therapies, and family support and training. BCW is also an excellent resource for hearing related professionals located in your area. For more information or to view a program contact list, visit the BCW webpage: http://health.state.ga.us/programs/bcw/ Parent-to-Parent of Georgia is a central resource and parent directory linked with the Babies Can't Wait Program. Other parents can be a great source of information based on their own experiences. They can discuss their feelings related to parenting a child with hearing loss and how their feelings have changed over time. 42 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss They can share their achievements and setbacks, and relate to the feelings you are having. In the state of Georgia, you can talk with other parents who have experienced the same things you are going through right now so you can begin sharing information and learning through their experiences, and you can talk to someone who understands. Visit the Parent-toParent webpage at: http://parenttoparentofga.org Children's Medical Services is a medical program for children and young adults, birth to age 21, with chronic medical conditions. Eligibility is based on income and diagnosis. Services available through this program could include those related to diagnostics and hearing disorders. For more information or to view a program contact list, visit the CMS webpage: http://health.state.ga.us/programs/cms/ Department of Education Resources (DOE) Within the Department of Education is the Georgia Parent Infant Network for Educational Services (Georgia PINES). Georgia PINES is a free, statewide, home intervention program available to families of children ages' birth to five years who have hearing or vision impairments. 43 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Family training is offered which focuses on both the needs of the family and the child. The training promotes understanding of the child's special needs, and provides functional strategies to stimulate the child's auditory, speech and language development in the home environment. There are trained parent advisors in each of Georgia's nineteen health districts. Parent advisors are professionals (audiologists, speech therapists and teachers of the hearing impaired). The role of the parent advisor is to support the child and their family and provide the family with information, training, resources and support. Georgia PINES collaborates with other agencies involved with the family and has a loaner equipment bank, which includes hearing aids. For more information, visit the Georgia PINES webpage: http://www.gapines.net Your local school system is responsible for providing educational services for children who are deaf and hard-of-hearing beginning at three years of age. Once your child is 2 1/2 years old, the school system will meet with you and evaluate your child, so that they can plan an appropriate educational program for him/her when he/she turns three and transitions to a DOE program. 44 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss GLOSSARY Here are terms you may hear in the weeks and months ahead. If they are used or described in the text of this Resource Guide, the page is indicated. Aided responses: responses to sounds during a hearing test given by a person who is using amplification (such as a hearing aid or hearing aids) during the test. Audiogram: a graphic record of hearing ability across the tested frequencies; used to describe hearing loss. (p. 17, 19) Americans with Disabilities Act (ADA): signed into law in 1990, this is a "civil rights" act for persons with disabilities, which requires public services and buildings to make reasonable accommodations to allow access by persons with disabilities. Assistive listening device/system: any device used to help a person hear better in a particular situation. Usually used to describe a device or system that places a microphone near a sound source to provide a clearer or amplified signal to a listener in a situation where there is or may be a lot of background noise. (p. 34) Audiologist: a professional specializing in the measurement of hearing ability and intervention strategies for persons with hearing loss. In Georgia, audiologists must have an advanced degree in the field and be licensed by the state. (p. 9) 45 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Auditory nerve: the cranial nerve (VIII) that carries nerve impulses from the inner ear to the brain. (p. 13, 14) Auditory training: exercises in listening to environmental sounds, music, and speech to practice recognizing what has been heard. Aural habilitation/rehabilitation: a training program for hearing impaired persons that focuses on learning to use residual hearing, speech-reading, and other techniques to communicate. Bilateral hearing loss: hearing loss is present in both ears. (p. 1, 42) Binaural: using both ears to listen. Cochlea: a spiral shaped cavity of the inner ear that contains nerve endings essential for hearing, often referred to as the "inner ear". In the cochlea, sound vibrations are converted to nerve impulses, which travel up the auditory nerve to the brain. (p. 13, 14, 15, 34) Conductive hearing loss: a hearing loss caused by a blockage or abnormality occurring in the outer or middle ear. (p. 14, 33) Congenital: present at or before birth. Deaf: a term sometimes used to refer to persons who have a severe to profound hearing loss (usually greater than 70 dB) in both ears. The term is also sometimes used to refer to those who consider themselves to be a part of the deaf culture or community and use American Sign Language instead of verbal communication. 46 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Deaf Culture: the set of shared attitudes, values, goals, and practices of the Deaf, based on a common heritage and use of American Sign Language for communication. (p. 25, 46) Decibel (dB): the units used to measure the loudness of a sound - the higher the dB level, the louder the sound. Earmold: a custom-molded piece of acrylic or other material that fits snugly into the outer ear. The earmold either contains the hearing aid (for an in-the-ear hearing aid), or is attached to the behind-the-ear hearing aid by tubing. (p. 31) Expressive language: words, signs, gestures and language concepts used to convey a person's thoughts and meaning. Feedback: the high whistling noise caused when the amplified sound from a hearing aid goes back into the microphone of the hearing aid, which can be the result of a poorly fitting earmold or a damaged hearing aid. Frequency: a term used to describe the pitch of a sound, which is measured in cycles per second. Frequency is usually expressed in Hertz (Hz), another term for cycles per second. The more cycles per second (the larger the number), the higher the pitch of the sound. (p. 17, 18, 34) Hard of hearing: a term sometimes used to describe a person with hearing loss in one or both ears, usually those with hearing loss in the mild to severe range. 47 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Hearing aid: a device used to make sounds louder as they are going into the ear canal, so they will be more easily detected by an ear with hearing loss. (p. 28-33) Hearing loss: the loss of sensitivity to detect sounds within the range detectable by normally hearing people, due to any cause. Hearing impairment: the inability to detect sounds within the range detectable by normally hearing people, often used interchangeably with `hearing loss'. (`Hearing impairment' is the term used for the disability category used by the Individuals With Disabilities Act (IDEA). (p. 24) Intensity: a term used to describe the loudness of a sound, which is measured in decibels (dB). The larger the number of decibels, the louder the sound. Mixed hearing loss: hearing loss that is part sensorineural and part conductive in nature. (p. 14) Ossicles: the chain of three tiny bones in the middle ear (malleus, incus, and stapes). (p. 13) Otitis media: an inflammation or infection in the middle ear. Otolaryngologist: a medical doctor specializing in problems in the ear, nose and throat. Otologist: a medical doctor specializing in problems in the ear. 48 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss PE tube: a pressure-equalizing tube inserted into the eardrum to provide air to the middle ear, permit drainage, and equalize the air pressure between the middle ear and the ear canal. Post-lingual deafness: hearing loss that is acquired or begins after a person has learned language. Pre-lingual deafness: hearing loss that is present or begins before a person has learned language (usually before two years of age). Pure tone average (PTA): an average of the hearing thresholds at the frequencies 500Hz, 1000Hz, and 2000Hz; often used to compare with the threshold of response to a speech signal, which contains all of those frequencies. Real ear measurement: a measurement of the resonance of the ear canal and the output of a hearing aid, made while the person is wearing the hearing aid. Receptive language: words and language concepts that one understands. Residual hearing: any measurable hearing that a person with hearing loss still has and can use for communication, with or without amplification devices. Sensorineural hearing loss: hearing loss caused by damage or absence of hair cells in the cochlea and/or problems with the auditory nerve. (p. 14) 49 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Speech "banana": an area often marked on an audiogram to show the range of frequencies (pitch) and intensities (loudness) that are necessary for hearing all parts that make up the sounds of speech. (p. 19) Speech range: the area on the audiogram, in frequency and intensity, where most sounds of human speech occur when a person speaks at a normal conversational level. (p. 19) Speech-language pathologist: a licensed and/or certified professional with special training to evaluate and work with individuals who have specific needs in the areas of speech and language. (p. 11) Speech-reading: observing lip and mouth movements and facial expressions to understand spoken words; also referred to as lip-reading. TDD (Telecommunication Device for the Deaf): an electronic device that allows persons to communicate by a telephone that shows typed messages. Threshold: the softest, faintest level at which a sound is heard 50% of the time by the person whose hearing is being tested (may be either a pure tone or speech sound). (p. 19) Tympanic membrane: the eardrum - separates the outer and middle parts of the ear and moves to transmit sounds. Unaided responses: responses to sounds during a hearing test given by a person who is not using amplification during the test. Unilateral hearing loss: hearing loss present in one ear only. (p. 1, 29) 50 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Resources for Families and Professionals For a current list of audiologists in Georgia that serve infants and children, visit the UNHS webpage at: http://health.state.ga.us/programs/unhs/audiologists.asp The following public organizations are dedicated to providing information for families of infants and children diagnosed with a hearing loss and the professionals who work with these individuals. We hope these resources will answer many of the questions you may have. For a list of private providers in your local area, please refer to the listing of district UNHS Liaisons at the end of the Georgia Resources. 51 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss GEORGIA RESOURCES Atlanta Area School for the Deaf http://http://www.aasdweb.com 890 Indian Creek Drive Clarkston, GA 30021 (404) 296-7101 A State of Georgia school established in 1972, AASD is devoted to providing quality, comprehensive, full-day instructional services to infants, children, and youth who are deaf, including persons with multiple handicaps. Classroom programs range from preschool through twelfth grade. Students experience a range of academic, vocational, and social opportunities. Atlanta Hears/Atlanta Chapter SHHH http://http://www.georgiashhh.org Self Help for Hard of Hearing People. The website gives contacts for local chapters in Georgia and near Georgia. Promotes awareness and information for hard of hearing people in Georgia. Babies Can't Wait (BCW) Program http://health.state.ga.us/programs/bcw/ 1-800-229-2038 Statewide early intervention services for children with a severe or profound bilateral hearing loss and/or significant developmental delay Georgia's IDEA Part C Program. Children 1st http://health.state.ga.us/programs/childrenfirst/ 1-800-822-2539 (Powerline) Georgia's system for linking families with children age 0-5 to public and private support services. Service linkage through Children 1st is available through all Georgia's public health districts. Children's Medical Services (CMS) http://health.state.ga.us/programs/cms/ 1-800-229-2038 Statewide Public Health support program for children birth to age 21 with chronic medical problems including hearing loss. 52 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Georgia Council For the Hearing Impaired, Inc. http://http://www.gachi.org 4151 Memorial Drive, Suite 103-B Decatur, Georgia 30032-1511 (404) 292-5312 Voice/TTY, 1-800-541-0710 Voice/TTY Aims to establish and maintain a system of statewide services to the deaf, hard of hearing, late deafened, deaf-blind and other individuals or groups with whom they interact. Posts meetings and classes, etc. Georgia Department of Education http://http://www.doe.k12.ga.us 2054 Twin Towers East Atlanta, Georgia 30334 (404) 656-2800 Georgia DOE on-line contact for information about public school programs. Georgia Department of Education Program for Exceptional Students http://http://www.doe.k12.ga.us/curriculum/exceptional 1870 Twin Towers East Atlanta, Georgia 30334-5040 (404) 656-3963 The DOE program which assists local school systems in providing special education and related services. Georgia PINES (Parent Infant Network for Educational Services): http://http://www.gapines.net 890 North Indian Creek Drive Clarkston, Georgia 30021 (404) 298-4882 or 1-800-522-8652 Statewide program providing free weekly family training home visits, and visits in natural environments for families of children birth to five years of age with hearing/vision loss to develop auditory, speech and language skills. Loaner hearing aids. Occupational and physical therapy. Parent workshops. Collaboration with other agencies. Funded by the Department of Education. 53 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Georgia Relay Services http://www.georgiarelay.org Georgia Public Service Commission 244 Washington Street, SW Atlanta, GA 30034 1-800-682-8786 Telephone services that enable people who have difficulty hearing or speaking to communicate with conventional phone users over standard phone lines. Georgia School for the Deaf http://gsdweb.org 232 Perry Farm Road, SW Cave Spring, Georgia 30124 (706) 777-2200 State residential school for deaf children ages 4 through 21 Georgia Sensory Assistance Project http://education.gsu.edu/GeorgiaDeafblindProj Georgia State University Dept. of Educational Psychology & Special Education University Plaza P.O. Box 3979 Atlanta, GA 30303-3979 (404) 651-1262 (V or TTY) Provides information, training, and technical assistance for families of children with deaf/blindness. Parent to Parent of Georgia http://www.parenttoparentofga.org Central Office: 3805 Presidential Parkway, Suite 207 Atlanta, GA 30340 (770) 451-5484 1-800-229-2038 Georgia support and information resource for parents of children of disabilities. Site lists both English and Spanish contacts across the state. Universal Newborn Hearing Screening and Intervention Program http://health.state.ga.us/programs/unhs/ (404) 657-4143 Statewide initiative to develop and sustain a comprehensive coordinated system for Universal Newborn Hearing Screening in Georgia to assure that all newborns receive a hearing screen prior to hospital discharge, infants with hearing loss are diagnosed by 3 months of age, and are referred for appropriate intervention by 6 months of age. Following is a contact list for State UNHS programs and the counties that they serve. 54 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss UNIVERSAL NEWBORN HEARING SCREENING AND INTERVENTION CONTACT LIST State Office 2 Peachtree Street, NW 11th Floor, Room 273 Atlanta, GA 30303 404.657.4143 Health District Rome 1-1 Dalton 1-2 Gainesville 2 Counties Served Bartow, Catoosa, Chattooga, Dade, Floyd, Gordon, Haralson, Paulding, Polk, Walker Cherokee, Fannin, Gilmer, Murray, Pickens and Whitfield Banks, Dawson, Forsyth, Franklin, Habersham, Hall, Hart, Lumpkin, Rabun, Stephens, Towns, Union, White Mailing Address and Phone Number UNHS Program 501 Broad Street, Suite 211 Rome, GA 30161 Tel. (706) 802-5626 Fax: Tel. (706) 802-5309 UNHS Program 100 West Walnut Avenue Suite 92 Dalton, GA 30720 Tel. (888) 276-1558 or (706) 272-2219 Fax: (706) 272-2266 UNHS Program 1856 Thompson Bridge Road, Suite 103 Gainesville, GA 30501 Tel. (770) 535-6907 Fax: (770) 538-2784 Cobb 3-1 Cobb, Douglas UNHS Program 1650 County Services Parkway Marietta, GA 30008-4010 Tel. (770) 514-2460 Fax: (770) 514-2742 Fulton 3-2 Fulton Clayton 3-3 Clayton UNHS Program 151 Ellis St., Suite 150 Atlanta, GA 30303 Tel. (404) 730-8770 Fax: 404-730-8781 UNHS Program 1380 Southlake Plaza Drive Morrow, GA 30260 Tel. (770) 961-1330 Fax: (770) 961-8370 Gwinnett 3-4 Gwinnett, Rockdale, Newton UNHS Program 324 West Pike Street Lawrenceville, GA 30246-0897 Tel. (678) 442-6900 Fax: (770) 277-2024 55 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Health District Dekalb 3-5 LaGrange 4 Counties Served Dekalb Butts, Carroll, Coweta, Fayette, Heard, Henry, Lamar, Meriwether, Pike, Spalding, Troup, Upson Mailing Address and Phone Number UNHS Program 440 Winn Way Decatur, GA 30031 Tel. (404) 294-3722 Fax: (404) 294-6316 UNHS Program 122 Gordon Commercial Dr., Suite A LaGrange, GA 30240-5740 Tel. (706) 845-4035 Fax: (706) 845-4038 Dublin 5-1 Bleckley, Dodge, Johnson, Laurens, Montgomery, Pulaski, Telfair, Treutlen, Wheeler, Wilcox UNHS Program 524 Academy Avenue Dublin, GA 31021 Tel. (478) 275-6844 Fax: (478) 274-7893 Macon 5-2 Augusta 6 Columbus 7 Valdosta 8-1 Albany 8-2 Coastal District 9-1 Baldwin, Bibb, Crawford, Hancock, Houston, Jasper, Jones, Monroe, Peach, Putnam, Twiggs, Washington, Wilkinson UNHS Program 811 Hemlock St. Macon, GA 31201 Tel. (478) 751-6179 Fax: (478) 751-6429 Burke, Columbia, Emanuel, Glascock, Jefferson, Jenkins, Lincoln, McDuffie, Richmond, Screven, Taliaferro, Warren, Wilkes Chattahooche, Clay, Crisp, Dooly, Macon, Harris, Muscogee, Marion, Quitman, Randolph, Schley, Stewart, Sumter, Talbot, Taylor, Webster Ben Hill, Berrien, Brooks, Cook, Echols, Irwin, Lanier, Lowndes, Tift, Turner UNHS Program Baker, Calhoun, Colquitt, Decatur, Dougherty, Early, Grady, Lee, Miller, Mitchell, Seminole, Terrell, Thomas, Worth Chatham, Effingham, Bryan, Camden, Glynn, Liberty, Long, McIntosh UNHS Program 1916 North Leg Road Augusta, GA 30909-4437 Tel. (706) 667-4757 Fax: (706) 667-4555 UNHS Program 705 17th Street, Suite 207 Columbus, GA 31902-2299 Tel. (706) 327-0951 Fax: (706) 327-9288 2700 N. Oak Street, Building B Valdosta, GA 31602 Tel. 800/316-8044 or (229) 293-6286 Fax: (229) 293-6292 UNHS Program 1306 South Slappey Boulevard Albany, GA 31701 Tel. (229) 430-4212 Fax: (229) 430-1379 UNHS Program 11706 Mercy Blvd. Bldg. 8 Savannah, GA 31419 Tel. (912) 657-2573 Fax: (912) 427-5380 56 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Health District Waycross 9-2 Athens 10 Counties Served Appling, Atkinson, Bacon, Brantley, Bulloch, Candler, Charlton, Clinch, Coffee, Evans, Jeff Davis, Pierce, Taftnall, Toombs, Ware, Wayne Barrow, Clarke, Elbert, Greene, Jackson, Madison, Morgan, Oconee, Oglethorpe, Walton Mailing Address and Phone Number UNHS Program SEHU ROSES Bldg. 1730 Reynolds St. Waycross, GA 31501 Tel. (912) 284-2920 Fax: (912) 338-5914 UNHS Program 330 Research Drive Suite 130 Athens, GA 30605 Tel. (706) 227-7182 Fax: (706) 227-7184 57 HHAAVVEE YYOOUU HHEEAARRDD??:: GGeeoorrggiiaa''ss RReessoouurrccee GGuuiiddee ffoorr FFaammiilliieess ooff CChhiillddrreenn wwiitthh HHeeaarriinngg LLoossss NATIONAL RESOURCES Alexander Graham Bell Association for the Deaf, Inc. http://www.agbell.org 3417 Volta Place NW Washington, DC 20007 (202) 337-5220 Gathers and disseminates information on hearing loss, promotes better public understanding of hearing loss in children and adults, provides scholarships and financial and parent-infant awards, promotes early detection of hearing loss in infants, publishes books on deafness, and advocates for the rights of children and adults who are hard of hearing or deaf. Local Georgia chapter information available. American Association of the Deaf-Blind (AADB) http://www.aadb.org 8620 Fenton Street, Suite 121 Silver Spring, MD 20910 (301) 495-4402 (TTY) (301) 495-4403 (Voice) A national consumer advocacy organization for people who have combined hearing and vision impairments. American Hearing Research Foundation (AHRF) http://www.american-hearing.org 8 South Michigan Ave., Suite 814 Chicago, IL 60603-4539 (312) 726-9670 Supports medical research and education into the causes, prevention, and cures of deafness, hearing losses, and balance disorders. Also keeps physicians and the public informed of the latest developments in hearing research and education. 58 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss American Society for Deaf Children (ASDC) http://www.deafchildren.org P.O. Box 3355 Gettysburg, PA 17325 (717) 334-7922 (Voice/TTY) 1-800-942-2732 (Parent Hotline) ASDC is a nonprofit parent-helping-parent organization promoting a positive attitude toward signing and deaf culture. Also provides support, encouragement, and current information about deafness to families with deaf and hard of hearing children. American Speech-Language Hearing Association http://www.asha.org 10801 Rockville Pike Rockville, MD 20852 1-800-638-8255 A professional/scientific organization for speech-language pathologists and audiologists concerned with communication disorders. Provides informational materials and a toll-free HELPLINE number for inquiries about speech, language, or hearing problems. Provides referrals to audiologists and speech-language pathologists in the U.S. Auditory-Verbal International, Inc. (AVI) http://www.auditory-verbal.org 1390 Chain Bridge Road, #100 McLean, VA 22101 (703) 739-1049 (703) 739-0874 (TTY) AVI is dedicated to helping children who have hearing losses learn to listen and speak. Promotes the AuditoryVerbal Therapy approach, which is based on the belief that the overwhelming majority of these children can hear and talk by using their residual hearing, hearing aids, and cochlear implants. 59 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Beginnings for Parents of Children Who are Deaf or Hard of Hearing, Inc. http://www.beginningssvcs.com P. O. Box 1720 Raleigh, North Carolina 27619 1-800-541-4327 V/TTY A resource and reference organization that produces materials and videos oriented towards helping families make choices about communication methods. Better Hearing Institute (BHI) http://www.betterhearing.org 515 King St., Suite 420 Alexandria, VA 22314 (703) 684-3391 A nonprofit, educational organization providing information on medical, surgical, and rehabilitation options for improving hearing loss and on hearing aids. Contact the Institute's Hearing Helpline for facts on hearing loss and a list of publications. Centers for Disease Control and Prevention, Early Hearing Detection and Intervention (EHDI) Program http://www.cdc.gov/ncbddd/ehdi 1-888-232-5929 Provides funds and education materials to state EHDI programs to assist with EHDI activities and supports research on the cause of hearing loss, surveillance systems, and the long-term effects of early intervention. Cochlear Implant Association, Inc. http://www.cici.org 5335 Wisconsin Avenue, NW, Suite 440 Washington, D.C. 20015-2052 (202) 895-2781 (Voice / TTY) Provides links and information about cochlear implants for implant users, families, and professionals. 60 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Deafness Research Foundation http://www.drf.org 8201 Greensboro Drive, Suite 300 McLean, VA 22102 1-800-829-5934 The nation's largest voluntary health organization, providing grants for fellowships, symposia, and research into causes, treatment, and prevention of all ear disorders. The DRF also provides information on hearing loss, and referral services. EAR Foundation http://www.earfoundation.org 1817 Patterson Street Nashville, Tennessee 37203 1-800-545-4327 (Voice/TTD) A national, not-for-profit organization committed to integrating the hearing and balance impaired person into the mainstream of society through public awareness and medical education. Also administers The Meniere's Network, a national network of patient support groups providing people with the opportunity to share experiences and coping strategies. Easter Seals http://easter-seals.org 230 West Monroe Street, Suite 1800 Chicago, IL 60606 1-800-221-6827 Easter Seals provides services to assist children and families with disabilities overcome obstacles to independence and reach his or her personal goals. Easter Seals includes families as active members of any therapy program, and offers the support families need. Website provides links to information about Easter Seals programs in North, East, Middle, and South Georgia. 61 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Gallaudet University http://www.gallaudet.edu 800 Florida Avenue NE Washington, DC 20002-3695 (202) 651-5000 (Voice/TTY) The world's only four-year liberal arts university for students who are deaf or hard of hearing, Gallaudet offers more than 50 undergraduate and graduate degree programs and numerous continuing education and summer courses. The University also disseminates information on deafness and hearing impairment. The Hearing Exchange http://www.hearingexchange.com P.O. Box 689 Jericho, NY 11753 (516) 938-5475 Online community for the exchange of ideas and information on hearing loss and related issues. Articles, books, and newsletters. Helen Keller National Center for Deaf-Blind Youths and Adults http://www.helenkeller.org 141 Middle Neck Road Sands Point, NY 11050 (516) 944-8900 The national center and its 10 regional offices provide diagnostic evaluations, comprehensive vocational and personal adjustment training, and job preparation and placement for people who are deaf-blind from every state and territory. Field services include information and referral and advocacy and technical assistance to professionals, consumers, and families. 62 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss House Ear Institute http://www.hei.org 2100 W. Third Street Los Angeles, CA 90057 1-800-388-8612 The Institute aims to improve the quality of life of those with an ear disease or hearing or balance disorder. Outreach programs focus on families with hearingimpaired children. Lead Line provides a nationwide information and referral service. My Baby's Hearing http://www.babyhearing.org Developed by the Boys Town National Research Hospital (BTNRH), an internationally recognized center for state-of-the art research, diagnosis and treatment of individuals with ear diseases, hearing and balance disorders, cleft lip and palate, and speech/language problems. The website contains valuable information for parents of babies and young children recently diagnosed with hearing loss. National Center for Hearing Assessment and Management (NCHAM) http://www.infanthearing.org Utah State University 2880 Old Main Hill Logan, UT 84322 (435) 797-3584 A project to promote the development of newborn hearing screening programs and provide technical assistance and resource information about the impact of early intervention with babies with hearing loss. 63 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss National Cued Speech Association http://www.cuedspeech.org 23970 Hermitage Road Cleveland, OH 44122-4008 1-800-459-3529 Membership organization that provides advocacy and support regarding use of Cued Speech. Information and services are provided for deaf and hard of hearing people of all ages, their families and friends, and professionals who work with them. National Family Association for Deaf-Blind (NFADB) http://www.nfadb.org 141 Middle Neck Road Sands Point, NY 11050-1299 (800) 255-0411 A non-profit, volunteer-based family association. National Information Center for Children and Youth with Disabilities http://www.nichcy.org P.O. Box 1492 Washington, DC 20013-1492 (800) 695-0285 Voice/TTY Provides fact sheets, state resource sheets, and general information to assist parents, educators, caregivers, and advocates in helping children and youth with disabilities participate as fully as possible in their community. Also publishes Technical Assistance Guides, Students' Guides, briefing papers, and annotated bibliographies on selected topics; many publications are available in Spanish and all are available on the Internet. 64 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss National Information Clearinghouse on Children who are Deaf-Blind (DB-LINK) http://www.tr.wou.edu/dblink 345 N. Monmouth Avenue Monmouth, OR 97361 (800) 438-9376 or (800) 854-7013 TTY Collects/disseminates information related to children and youth (ages 0-21) who are deaf-blind. Connects consumers of deaf-blind information to sources of information about deaf blindness, assistive technology, and deafblind people. DB-LINK is a collaborative effort involving the Helen Keller National Center, Perkins School for the Blind, and Teaching Research. National Institute on Deafness and Other Communication Disorders (NIDCD) http://www.nidcd.nih.gov 31 Center Drive, MSC 2320 Bethesda, MD 20892-2320 1-800-241-1044 TTY: 1-800-241-1055 A federally funded part of the National Institute of Health dedicated to research in hearing and communication disorders. Many links to current research information about hearing loss. S.E.E. (Signing Exact English) Center for the Advancement of Deaf Children http://www.seecenter.org P.O. Box 1181 Los Alamitos, CA 90720 (562) 430-1467 Voice/TTY Information and referral for parents and educators of deafness-related topics and Signing Exact English (SEE). Provides evaluation of sign skills, workshops, and consulting services related to communication in general and SEE in particular. 65 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss SHHH: Self Help for Hard of Hearing People http://www.shhh.org 7910 Woodmont Ave - Suite 1200 Bethesda, Maryland 20814 301-657-2248 Voice 301-657-2249 TTY Promotes awareness and information about hearing loss, communication, assistive devices, and alternative communication skills through publications, exhibits, and presentations. 66 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss My Contacts Pediatrician/Family Doctor: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ ENT Physician: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ Audiologist: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ Children 1st Coordinator: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ Early Intervention Specialist: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ Speech/Language Pathologist: __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ 67 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Other Contacts: ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ ___________________________________________________ Other 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__________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ __________________________________________________ 71 HAVE YOU HEARD?: Georgia's Resource Guide for Families of Children with Hearing Loss Developed by: with Input from Parents, Professionals, and the State Advisory Committee for Newborn Hearing Screening and Intervention Division of Public Health Family Health Branch Office of Infant & Child Health Universal Newborn Hearing Screening and Intervention 2 Peachtree Street, NW 11th floor, Room 285 Atlanta, GA 30303 404.657.4143 http://health.state.ga.us/programs/unhs/ DPH04.265HW