EARLY HEARING DETECTION PARENTING A CHILD WITH HEARING LOSS & INTERVENTION PROGRAM Resource Guide RESOURCES FOR FAMILES AND PROFESSIONALS For a current list of audiologists and health departments in Georgia that serve infants and children, visit the Service Locator on the Georgia Department of Public Health (DPH), Early Hearing Detection and Intervention (EHDI) Program webpage at: http://dph.georgia.gov/EHDI. The following public organizations are dedicated to providing information for families of infants and children diagnosed with hearing loss and the professionals who work with these individuals. We hope these resources may answer many of the questions you may have. GEORGIA RESOURCES Atlanta Area School for the Deaf (AASD) www.aasdweb.com (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 disabilities. Classroom programs range from Pre-K through 12. Students experience a range of academic, vocational and social activities. Atlanta Speech School www.atlantaspeechschool.org (404) 233-5332 Established in 1938, the Atlanta Speech School is a comprehensive center for language and literacy. Our four schools, five clinics, summer programs and professional development center all share one common mission: to work within each program and collaborate across all programs to help each person develop his or her full potential through language and literacy. Auditory Verbal Center (AVC) avchears.org (404) 633-8911 AVC is a nonprofit organization that offers comprehensive AuditoryVerbal therapy and a full-service Audiology & Hearing Aid Clinic. AVC focuses on listening and spoken language, with locations in Atlanta and Macon and for those families who can't make the drive, they offer teletherapy. AVC teaches all children with any degree of hearing loss how to listen and speak without the use of sign language or lip reading. Babies Can't Wait (BCW) Program dph.georgia.gov/Babies-Cant-Wait (800) 229-2038 Statewide early intervention services for children with bilateral hearing loss of any degree and/or significant developmental delay Georgia's IDEA Part C Program. Children 1st dph.georgia.gov/children-first (404) 657-2850 Children 1st is the "Single Point of Entry" to a statewide collaborative system of public health and other prevention-based programs and services. Children 1st is Georgia's system for linking families. Children's Healthcare of Atlanta (CHOA) choa.org (404) 785-7100 CHOA offers auditory verbal therapy for children with hearing loss. Through auditory-verbal therapy, children with mild through profound hearing loss may become independent, contributing citizens in a regular learning and living environment. The approach uses a guiding set of principles to maximize the use of hearing devices and residual sound. Children's Medical Services (CMS) dph.georgia.gov/CMS (404) 657-2850 Statewide Public Health program for children, birth to age 21 that assists families with children that have chronic medical problems including hearing loss. Columbus Speech & Hearing Center http://www.columbusspeechandhearingcenter.com/ (706) 324-6112 Columbus Speech & Hearing Center provides diagnostic and rehabilitative audiology, speech-language pathology and neuropsychological services. Their dedicated staff works together to provide the highest quality care in a professional, comfortable, nurturing environment. Georgia Academy of Audiology http://www.georgiaaudiology.org/ The Georgia Academy of Audiology is a professional organization of audiologists and friends of the audiology community that promotes quality hearing and balance care by advancing the profession of audiology through leadership, advocacy, education, public awareness, and support of research. Georgia Center of the Deaf and Hard of Hearing (GCDHH) gcdhh.org (800) 541-0710; (404) 292-5312 (Voice/TTY); (404) 381-8447 (VP) GCDHH is a statewide nonprofit organization that provides a variety of assistive services to the deaf and hard of hearing, their family members and friends, local state and federal agencies. Georgia Department of Education (DOE) www.gadoe.org (800) 311-3627 Georgia DOE oversees public education throughout the state. The State Schools Division includes the Atlanta Area School for the Deaf, the Georgia School for the Deaf, the Georgia Academy for the Blind, GA PINES, and State-wide Outreach for Professionals working with students with sensory disabilities. GA Hands & Voices gahandsandvoices.org (678) 310-5886 The Georgia Hands & Voices Chapter is dedicated to supporting Georgia families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. Hands & Voices is a parent- driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Outreach activities, parent professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard of Hearing children to reach their highest potential. Georgia Hands & Voices Guide By Your Side Program gahandsandvoices.org/Guide_By_Your_Side.html Georgia Hands & VoicesTM Guide By Your SideTM (GBYS) is a family support program that embodies the mission of Hands & Voices, which is to provide support and resources in an unbiased manner to families with children who are deaf or hard of hearing (DHH). GBYS does this with specially trained parents of children with deafness or hearing loss who work as "guides" directly with families who have just learned their child cannot hear, or who have older children and are in need of the unique family support. Georgia Lions Lighthouse Foundation lionslighthouse.org (404) 325-3630 The Lighthouse Foundation Pediatric Hearing Program includes all children from birth through 19 years old who are not covered by Georgia PeachCare, Right from the Start Medicaid, or private insurance and whose families make less than 400% of the Federal Poverty Guidelines. The program covers up to two (2) new digital hearing aids or Ponto Soft Band processor, nine (9) appointments with a partner audiologist, and either six (6) or twelve (12) earmolds depending on hearing loss. There is a client co-payment based on a sliding scale according to gross household income and the number of hearing aids required. Georgia Parent Infant Network for Educational Services (PINES) gapines.info (404) 300-5905 Statewide program funded by the Georgia DOE, providing free 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. Georgia PINES also provides loaner hearing aids, occupational and physical therapy, parent workshops and collaborates with other agencies. Georgia Registry of Interpreters for the Deaf www.garid.org The Georgia Registry of Interpreters for the Deaf endeavors to promote initiatives to further the profession of Sign Language Interpreting through a statewide alliance of professional interpreters, students of the profession, and consumers of interpreting services. Georgia Relay Services georgiarelay.org (866) 694-5824 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 (GSD) gsdweb.org (800) 497-3371; (706) 777-2200 For more than 160 years, GSD has provided for the educational, social and emotional needs of Georgia's deaf and hard-of-hearing children. GSD is a residential school. Georgia Sensory Assistance Project (GSAP) gsap.coe.uga.edu GSAP provides technical assistance to children with deaf blindness, from birth through 21 years of age, and to their families and service providers. Technical assistance may include in-home consultation, school consultation, family support, networking, demonstration site development, in services, weekend retreats, summer institutes, loaner bank, material and monograph development, statewide advisory program, referrals to other agencies, and resources. Parent to Parent of Georgia p2pga.org (800) 229-2038 Support, information, education and leadership development for Georgia families caring for children and youth/young adults (birth to 26 years of age) with disabilities or special health care needs. Savannah Speech and Hearing Center speechandhearingsav.org (912) 355-4601 The Savannah Speech and Hearing Center provides comprehensive services to people of all ages with speech, language and/or hearing problems without regard to financial status. The center offers a program, specific for children with hearing loss, Sound Start. The Sound Start program provides an option for families and their child(ren) with hearing loss to develop the ability to learn to listen, speak and understand spoken language in order to be successful in a mainstreamed educational setting. Any child with a hearing loss affecting speech and language development is eligible for the school. Early Hearing Detection and Intervention (EHDI) Program https://dph.georgia.gov/EHDI (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. 20/20 Hearing Foundation http://www.2020hearing.org/ Provides financial support for hearing aids and associated audiological care for Georgia families who demonstrate a financial need. No residency requirement. NATIONAL RESOURCES American Academy of Audiology www.audiology.org (703) 790-8466 The American Academy of Audiology is the world's largest professionalorganization of, by, and for audiologists. The active membership of more than 12,000 is dedicated to providing quality hearing care services through professional development, education, research, and increased public awareness of hearing and balance disorders. Alexander Graham Bell Association for the Deaf and Hard of Hearing info@agbell.org www.agbell.org/Families/Listening-and-Spoken-Language 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 is available. American Association of the Deaf-Blind (AADB) aadb.org aadb-info@aadb.org AADB is a national consumer advocacy organization for people who have combined hearing loss and vision impairment. American Hearing Research Foundation (AHRF) american-hearing.org (630) 617-5079 AHRF supports medical research and education into the causes, prevention, and cures of deafness, hearing losses and balance disorders. AHRF also keeps physicians and the public informed of the latest developments in hearing research and education. American Sign Language University lifeprint.com/asl101 ASLU is an online American Sign Language curriculum resource center. ASLU provides free self-study materials, lessons, and information, as well as fee-based instructor-guided courses. Many instructors use the ASLU lesson pages as the "textbook" for their local ASL classes. American Society for Deaf Children (ASDC) deafchildren.org (800) 942-2732 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 (ASHA) asha.org (800) 638-8255 ASHA is a professional organization for speech-language pathologists and audiologists, which has an online directory of providers. ASHA provides informational materials and a toll-free HELPLINE number for inquiries about speech, language, or hearing problems. BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc. ncbegin.org (800) 541-4327 BEGINNINGS provides parents accurate, objective information about hearing loss, could make sound decisions for their child. These decisions involve placement, communication methodology and related service needs. Our staff is committed to providing services in a family centered atmosphere to facilitate active involvement of parents in their child's social, emotional and educational growth. Hearing Industries Association (HIA) https://www.hearing.org/ (202) 975-0905 The Hearing Industries Association (HIA) is a not-for-profit corporation that educates the public about the neglected problem of hearing loss and what can be done about it. HIA works to erase the stigma and end the embarrassment that prevents millions of people from seeking help for hearing Centers for Disease Control and Prevention (CDC) Early Hearing Detection and Intervention (EHDI) Program https://www.cdc.gov/ncbddd/hearingloss/ehdi-programs.html (800) 232-4636 The CDC provides funds and educational 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. Center for Parent Information with Resources www.parentcenterhub.org 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. Easter Seals www.easterseals.com (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. Family Voices www.familyvoices.org (888) 835-5669 Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through a national network, they provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on healthcare. Hands & Voices handsandvoices.org Parentadvocate@handsandvoices.org (303) 492-6283 Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. Hands & Voices is a parent-driven, nonprofit organization providing families with the resources, networks and information they need to improve communication access and educational outcomes for their children. Outreach activities, parent professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard of Hearing children to reach their highest potential. Hearing Loss Association of America (HLAA) hearingloss.org (301) 657-2248 HLAA promotes awareness and information about hearing loss, communication, assistive devices, and alternative communication skills through publications, exhibits, and presentations. Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) helenkeller.org info@helenkeller.org (718) 522-2122 The mission of the Helen Keller National Center for Deaf-Blind Youth and Adults (HKNC) is to enable all those who are deaf-blind to live and work in the community of their choice. It provides comprehensive vocational rehabilitation training at its headquarters in New York and assistance with job and residential placements when training is completed. Services in the field include 10 regional offices, over 40 affiliated agencies, a National Training Team and an Older Adult Program. HKNC also maintains a national registry of individuals who are deaf-blind. IDEA Partnership www.ideapartnership.org (877) 433-2463 The IDEA Partnership is dedicated to improving outcomes for students and youth with disabilities by joining state agencies and stakeholders through shared work and learning. The IDEA Partnership facilitates interaction and shared work across professional and family organizations around common interests. Let Them Hear Foundation letthemhear.org The Let Them Hear Foundation (LTHF) helps individuals with hearing loss H.E.A.R., specifically those lacking adequate access to funding and healthcare resources. LTHF provides Hearing services for underprivileged American youth; Education for professional and public sectors per cochlear implant hearing healthcare issues and practices; Access development for under-served persons through insurance advocacy and overseas medical missionary efforts; and Research concerning treatment for ear disease and function. My Baby's Hearing 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) infanthearing.org (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. National Cued Speech Association (NCSA) cuedspeech.org (800) 459-3529 The National Cued Speech Association supports effective communication, language development and literacy in individuals, families and children alike using Cued Speech. National Center on Deaf-Blindness (NCDB) https://nationaldb.org support@nationaldb.org (503) 838.8754 Collects and provides information related to children and youth (ages 0-21) who are deaf-blind. The center connects consumers of deafblind information to sources of information about deaf blindness, assistive technology, and deaf-blind people. NCDB is a collaborative effort involving the Helen Keller National Center, Perkins School for the Blind and Teaching National Family Association for Deaf-Blind (NFADB) nfadb.org (800) 255-0411 A non-profit, volunteer-based family association. 12 Georgia Department of Public Health Research. National Institute on Deafness and Other Communication Disorders (NIDCD) https://www.nidcd.nih.gov/ (800) 241-1044 800-241-1055 (TTY) A federally funded part of the National Institute of Health dedicated to research in hearing and communication disorders. Website contains web links to current research information about hearing loss. OBERKOTTER Foundation oberkotterfoundation.org info@oberkotterfoundation.org (215) 751-2601 OBERKOTTER Foundation is a collaborative, family-centered educational approach that develops a child's speech and listening abilities along with confidence and life skills to meet the challenges of the greater world. This means that parents and family play a key role right from the start. integrates the earliest and most natural intervention, the most current and inclusive education along with current hearing technologies, to enable children with a hearing loss to learn to listen and talk. S.E.E. (Signing Exact English) Center for the Advancement of Deaf Children seecenter.org (562) 430-1467 Center provides information and referral for parents and educators of deafness-related topics and Signing Exact English (SEE) and also provides evaluation of sign skills, workshops, and consulting services. GLOSSARY Aided response threshold(s): reflect responses to the softest sounds at different pitches that a person wearing amplification can detect during a hearing test. Acquired hearing loss: hearing loss that occurs after birth. 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. Amplification: Amplification can refer to many types of technologies that provide access to sound, including hearing aids, cochlear implants, assisted listening devices, and so forth. Assistive listening device/system: any device used to help a person hear better. 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. Audiogram: a graphic record of hearing ability across the tested frequencies which is used to describe hearing loss. Audiologist: a licensed professional specializing in hearing. Auditory Brainstem Response (ABR): a test that uses electrodes to record the response of the brainstem and auditory pathway from sounds presented by earphones. Auditory Neuropathy: a condition with normal cochlear function (OAEs are present) but have abnormal auditory nerve function (ABR is absent). Auditory nerve: the cranial nerve (CN VIII) that carries nerve impulses from the inner ear to the brain. Auditory training: exercises in listening to environmental sounds, music, and speech to practice recognizing what has been heard without facial cues. Aural habilitation/rehabilitation: a training program for persons with hearing loss that focuses on learning to use residual hearing, speechreading and other techniques to communicate. Bilateral hearing loss: hearing loss in both ears. Binaural: involving both ears; refers to hearing aids worn in both ears. Bone Conduction: sound that is sent from the surface of the skull to the inner ear; can refer to a type of hearing aid or direct way to test the function of the inner ear. Cochlea: the organ of hearing located within the inner ear. In the cochlea, sound vibrations are converted to nerve impulses, which travel up the auditory nerve to the brain. Cochlear implant: a surgically implanted device to transmit sounds in the environment to electro-acoustical impulses to stimulate the hearing nerve. Conditioned Play Audiometry: a type of hearing test used with children from 2.5 to 5 years of age where the child is trained to perform an easy task (e.g. dropping block in bucket) in response to a sound Conductive hearing loss: a hearing loss occurring in the outer and/or middle ear. Congenital: present at or before birth. Deaf: a term sometimes used to refer to persons who have a severe to profound hearing loss (greater than 70 dB HL) in both ears. The term 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 (ASL). Deaf Culture: the set of shared attitudes, values, goals, and practices of the Deaf, based on a common heritage and use of ASL for communication. 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 material that fits snugly into the outer portion of the ear. The earmold is attached to the behind-the-ear (BTE) hearing aid by tubing. Expressive language: words, signs, gestures, and language concepts used to communicate a person's thoughts and meaning. Feedback: the high pitch, whistling noise caused by a hearing aid that is not fit properly. Frequency: a term used to describe the pitch of a sound, which ismeasured in cycles per second. Frequency is measured in hertz (Hz). The more cycles per second the sound is, the higher the pitch of the sound. 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. Hearing aid: a device worn, used to make environmental sounds audible to the person. The device is programmed specifically for the person's hearing loss to make sounds audible at the pitches with hearing loss. Hearing loss: the partial or total inability to hear sounds within a given frequency (pitch) range due to a problem with the outer, middle, inner and/or hearing nerve. Hearing loss may be permanent, transient, progressive, stable and occur in one or both ears. Hertz (Hz): a unit of measure for frequency (pitch). Immittance testing: testing that measures and records middle ear function. Individual Education Plan (IEP): a child-focused plan for schooling the pre-school and school aged child. Individual Family Service Plan (IFSP): a family-focused plan for follow up care that covers the child until 3 years old. Individuals with Disabilities Education Act (IDEA): a law that governs early intervention programs for children with disabilities. 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 is in the environment. Localization: ability to determine where a sound comes from. Mixed hearing loss: hearing loss that is a combination of any two types of hearing loss. Monaural: affecting one ear; refers to hearing aid worn in only one ear. Ossicles: the chain of three tiny bones in the middle ear space (malleus, incus, and stapes). Otoacoustic Emissions (OAE): a test that uses a probe in the ear to measure the response of the cochlea to sounds that are presented to the ear. Otolaryngologist: a medical doctor specializing in problems of the ear, nose, and throat. Otologist: a medical doctor specializing in problems of the ear. Post-lingual hearing loss: hearing loss that is acquired or begins after a person has learned language. Pre-lingual hearing loss: 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 of 500 Hz, 1000 Hz, 2000 Hz, and 4000 Hz. PTA is used to determine overall degree/severity of hearing loss. Real ear measurement: a measurement of the hearing aid function, while it's being worn in the ear. 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. Sensory hearing loss: hearing loss caused by a problem in the cochlea (hearing organ). This type of hearing loss is generally permanent. "Speech banana": an area often marked on an audiogram to show the range of frequencies (pitch) and intensity (loudness) that are necessary for hearing all parts that make up the sounds of speech. Speech-Language Pathologist: a licensed and certified professional with special training to evaluate and work with individuals who have speech and language needs. Speech-reading: observing lip and mouth movements and facial expressions to understand spoken words; also referred to as lip-reading. Telecommunication Device for the Deaf (TDD): an electronic device that allows persons with hearing loss to communicate by a telephone, which uses text to relay the message. Threshold: the softest, faintest level at which a sound (or speech) is heard 50% of the time by the person whose hearing is being tested. Tympanic membrane: the eardrum; separates the outer and middle parts of the ear and moves to transmit sound. Unaided responses: responses to sounds during a hearing test, when the person being tested is not wearing any amplification or assistive listening device. Unilateral hearing loss: hearing loss occurring in only one ear. Visual Reinforcement Audiometry (VRA): a type of hearing testing used with children from 6 months to 2.5 years where a sound is presented, and the child turns his/her head to the sound. After the child turns his/her head to the sound, a visual reinforcement is presented to the child as a visual reward. MY CONTACTS EHDI Coordinator: _______________________________________________________ _______________________________________________________ _______________________________________________________ Pediatrician/ Family Doctor: _______________________________________________________ _______________________________________________________ _______________________________________________________ ENT Physician: _______________________________________________________ _______________________________________________________ _______________________________________________________ Audiologist: _______________________________________________________ _______________________________________________________ _______________________________________________________ Children 1st Coordinator: _______________________________________________________ _______________________________________________________ _______________________________________________________ Early Intervention Specialist: _______________________________________________________ _______________________________________________________ _______________________________________________________ Speech/ Language Pathologist: _______________________________________________________ _______________________________________________________ _______________________________________________________ Notes _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ _______________________________________________________ dph.georgia.gov/EHDI February 2020