Areas to Address with All Families Whose Infants/Toddlers are Identified as Deaf or Hard of Hearing A Checklist and Guide for Family Resources Coordinators and Early Intervention Services Providers This document is intended to support your early intervention team when a child is diagnosed as deaf or hard of hearing. Some regions of Washington State have fewer resources than others. Our goal is to help guide your team as you work together to develop a family s first IFSP, and beyond. In Washington, we have adopted the SKI- HI Curriculum as a resource guide for service providers and families during the first three years. There likely is a copy of this curriculum in your county. Contact us for information about ordering or borrowing one. Below is an overview of steps to take with all families when a child who is deaf or hard of hearing is referred to you for early intervention supports. Each is elaborated on the pages that follow. Area MEDICAL RECORDS: REFERRALS: Gather medical records, audiology reports. 1. PRE- IFSP: Contact the Washington State Center for Childhood Deafness and Hearing Loss (CDHL), to (a) register child; and (b) for input regarding local, regional, and state resources and B- 3 DHH specialty services. 2. Parent- to- Parent Support: Contact Guide- By- Your- Side (GBYS), to request a visit or phone conversation with an experienced parent. Comments/ Contact Info Contact : Audiologist, Primary Care Provider, and CDHL (see below) Kris Ching kris.ching@cdhl.wa.gov Christine Griffin 855-342- 1670 425-268- 7087 gbys@wahandsandvoices.org www.wahandsandvoices.org 3. Any concerns about child s vision, in addition to hearing loss? Contact Washington Sensory Disabilities Services (WSDS) for resources and information. BASIC GOALS FOR ALL FAMILIES IN THE FIRST FEW MONTHS: Nancy Hatfield wsds@psesd.org www.wsdsonline.org GOAL 1. The family/caregivers will be able to describe their child s hearing levels and understand the potential impact on child development and family communication. 800-572- 7000 GOAL 2. The family/caregivers will learn how to provide opportunities for early communication interactions with their child. GOAL 3. The family/caregivers will feel comfortable with their child s amplification system (e.g., hearing aids, ear molds, batteries) and possible future amplification options (e.g., cochlear implant/s), as appropriate. GOAL 4. The family/caregivers will increase their knowledge of different communication features and options available to provide their child with access to communication/language (e.g., American Sign Language, Listening and Spoken Language, Signing Exact English, etc.). GOAL 5. The family/caregivers will learn to observe and report their child s responses, and partner with their early intervention team in monitoring their child s growth of communication skills, both receptive and expressive.
MEDICAL RECORDS: Medical Records/Audiology Reports These contain important information needed for developing an appropriate IFSP. Reports may include: audiogram, tympanogram, and audiologist s summary report, diagnostic testing results, family history, and documentation pertaining to additional medical conditions and/or syndromes. TIP: Find out who the child s pediatric audiologist is and his/her hospital or clinic affiliation. The audiologist will provide information to parents about appropriate amplification to match the needs of the child s hearing levels. REFERRALS: TIP: Early support for infants/toddlers who are deaf and hard of hearing must begin as soon as possible following identification of hearing loss. 1. PRE- IFSP Contact Kris Ching at CDHL at (855) 342-1670 (or) Kris.Ching@cdhl.wa.gov If you live and work in a part of the state rich in services to support families of young children who are deaf or hard of hearing, you are fortunate! Many families in Washington State, however, have less- than- optimal access to a full range of services they might need. These might include: Sign language classes specially designed for families of young children Supports for families wishing to gain skills in a specific communication approach, such as Listening and Spoken Language or American Sign Language/English Bilingual Talking to adults who are deaf or hard of hearing. The families will decide on their priorities. We will do our best to help locate specialty services as needed, whether they are provided in person or via distance technology. Here s how CDHL can help: Ensure all bases are covered to support development of the child who is deaf/hard of hearing. Identify appropriate assessment tools for young children who are deaf/hard of hearing to determine current levels and monitor progress. (See Attachment 1.) Explain technologies (e.g., hearing aids, cochlear implants) in understandable language. Guide family s learning of strategies to promote communication in children with hearing loss. Locate local, regional, and state resources to support ongoing services to the family and the entire EI team. REMEMBER: As with all children, early supports for infants/toddlers who are deaf and hard of hearing are most effective when delivered in the child s natural environment wherever the child spends time, including the home, childcare center, recreational settings, homes of relatives. Kris Ching/CDHL will help you consider all possible local, regional, and state resources as you think about services that could help support a family. These might include B- 3 Deaf/Hard of Hearing specialists, or a graduate of the SKI- HI Curriculum training who lives in your county. Other resources to consider are the eight regional service centers for the deaf and hard of hearing located around the state, which offer education and training among other services. To learn more and find one near you, see: http://www.dshs.wa.gov/odhh/resources/rsc.shtml
2. Parent- to- Parent Support Contact Guide By Your Side (GBYS) Program: 425-268- 7087 Trained GBYS Parent Guides provide unbiased emotional support and information to families with children with hearing loss. GBYS is a program of Hands and Voices, a national parent organization with a Washington State chapter: www.wahandsvoices.org Here s how Guide By Your Side can help: Family members can get support and learn from veteran parents. Learn about all communication options and resources. Link up with other families and family events. Get tools to navigate challenging systems. 3. Vision Concerns/ Deaf- Blind Supports Contact WSDS: 800-572- 7000 Washington Sensory Disabilities Services is a statewide project to provide information, training, technical assistance and resources to families and educators regarding individuals who are deaf, hard of hearing, visually impaired, blind, or have a combined hearing and vision loss. Special supports, including a lending library, are available for families and service providers of infants/ toddlers diagnosed as deaf or hard of hearing who also have a suspected or diagnosed visual loss. BASIC GOALS FOR ALL FAMILIES: INTRODUCTION: SKI- HI CURRICULUM: In partnership with CDHL, refer to selected SKI- HI Curriculum topics for guidance during the first weeks. The SKI- HI Curriculum contains information and activities for families on early communication, audition, hearing aids, American Sign Language (ASL) resources, aural- oral language, total communication, and psycho- emotional support. The SKI- HI approach for information gathering, child assessment, and program planning needed for developing the Individual Family Service Plan (IFSP) is also covered in the manual. Service providers around the country are using this program with more than 5,000 children annually. Twenty years of strong data from many of these service providers support the effectiveness of the program. GOAL 1. The family/caregivers will be able to describe their child s hearing levels and understand the potential impact on child development and family communication. Share information with the family and caregivers describing the child s hearing levels on the audiogram, the need for ongoing audiological management and the potential impact on development via use of SKI*HI Curriculum, WA State Hearing Loss Helper for Families of Children with Hearing Loss, and additional video or text materials. GOAL 2. The family/caregivers will learn how to provide opportunities for early communication interactions with their child. a) Coach the family/caregivers on effective parent- child interaction strategies that, when used consistently, will result in optimum communication access using information from the SKI*HI Curriculum and internet resources. This information will be provided over time and will apply to different everyday routines, activities, and places. b) Through observation, discussion and coaching, assist the parents/caregivers in integrating parent- child communication strategies into their daily family and/or childcare activities.
GOAL 3. The family/caregivers will get off to a good start with understanding and feeling comfortable with their child s amplification system (e.g., hearing aids, ear molds, batteries) and possible future amplification (e.g., cochlear implant/s), as appropriate. Many deaf and hard of hearing children are fitted with hearing aids through an audiologist at a clinic or hospital shortly after receiving diagnosis of hearing loss. Although the audiologist will explain hearing aid technology to parents and the steps they need to take to obtain hearing aids, they often need time to process and make sense of the information. Families often need support to better understand new vocabulary and how to take care of and manage hearing aid equipment. Young children also need support in using hearing aids as the auditory stimulation will be new to their brain, along with the fact that hearing aids are very small and can be tempting to pull out of their ears, mouth and/or play with. Cochlear implants (CIs) are an option of hearing technology for some deaf children. Outcomes vary depending on the individual child and external factors. A team of medical specialists will determine if a child is a good candidate for a cochlear implant and an aural habilitation specialist or teacher of the deaf will help develop an intensive educational plan. Beyond the surgery, a family must invest time and energy into auditory and speech/ language therapy. Tip: Communication modality is not chosen based on the hearing technology a child uses. Parents who choose to use amplification may also use sign language along with spoken language. Sign language is often used as a bridge to spoken language. SUPPORT THE FAMILY AS CHILD IS FITTED WITH APPROPRIATE AMPLIFICATION: A professional who specializes in working with young children who are deaf or hard of hearing may help by attending an audiology appointment to serve as a notetaker. The professional can debrief with parents to explain audiology terminology and vocabulary so parents can learn details about their child s hearing loss and become a well- informed advocate for their child. Parents may need to review their child s audiogram and other audiological information a few times before they are comfortable in their understanding of the information. Be sensitive to the emotional state of parents/caregivers. o Some parents are sensitive to the fact that hearing aids are a visible sign of their child s hearing loss, and may need support on the acceptance of using hearing technology. o Support parents in how to talk about the hearing aids to other family members, friends, and people in the community. o Connect the family with other families who have children who are deaf or hard of hearing to have parent- to- parent networking support. (See above: Guide By Your Side) Use a hands on approach to allow parents to become comfortable and master daily hearing aid checks, problem solving, and putting hearing aids on their baby or toddler. Earmolds will need to be replaced and made as the child grows. Squealing or chirping sounds, called feedback, from hearing aids may indicate a need for new earmolds as the fit has become loose. Work with the Teacher of the Deaf or D/HH specialist on strategies for keeping hearing aids on an infant or toddler. Support parents on how to observe their child s responses to voices, environmental sounds, and how their child communicates naturally. Hearing aids are programmed according to the child s individual audiogram & current audiological information. Auditory stimulation/input is new for the child; it may take time to adjust to using them daily.
GOAL 4. The family/caregivers will increase their knowledge of different communication features and options available to provide their child with access to communication/language (e.g., American Sign Language, Listening and Spoken Language, Signing Exact English, etc.). Families need accessible, accurate, and up- to- date information to support their understanding about their child s hearing and its impact on development. The better the parents understanding the more positively they will respond and become a knowledgeable advocate for their child. As families get to know their child and explore communication options, the most important consideration is that their child is able to access communication whether through a visual modality (i.e., gestures and sign language), an auditory modality (i.e., via hearing aids or cochlear implants), or both. TIP: Communication and language development are at the heart of early supports for infants and toddlers who are deaf or hard of hearing SUPPORT THE FAMILY IN ESTABLISHING A COMMUNICATION FOUNDATION THAT WORKS FOR THEM: Focus first on the development of close, rich communication between the child and all others in the child s world (Goal 2). Language development builds on that foundation of communication. Services spelled out in the IFSP help the family learn about communication/language approaches, introducing the family to the use of listening and speech, and the use of visual- gestural communication including signs, without imposing biases on the parents. Communication between parents, family members and the baby start from the very beginning regardless of the child s hearing levels. o Parentese/Motherese o Interactive communication o Child focused A professional who specializes in working with families that have a child who is deaf or hard of hearing should introduce and present information about communication modalities people who are deaf/hard of hearing use. This information must be presented in a neutral manner so as not to sway or encourage a family towards a specific mode of communication or to only what is available in the community. Focus on communication/language learning opportunities in the home environment and other natural places the child frequents. Use daily routines and other every day activities to introduce and practice language/communication with the child. Notice what the child is focused on or is playing with. Coach parents/caregivers in offering a play- by- play to give words and expressions to what the child is doing, wants/needs or is feeling. When adults use more interesting facial expressions, exaggerated signs or gestures, and plays with the intonation of voice, it encourages young children to pay closer attention. o o o The more babies/toddlers are cued into communication/interactions, the more they learn. Direct eye contact is crucial for one- on- one communication. Make communication and language learning fun by playing with voice, signs, gestures, touch, eye gaze, facial expressions. Monitor progress and changes in how the child communicates naturally follow the child s lead.
GOAL 5. The family/caregivers will learn to observe and report their child s responses, and partner with their early intervention team in monitoring their child s growth of communication skills, both receptive and expressive. Provide specific information to the parents describing the elements of the communication development monitoring process at each IFSP review. The family will become familiarized with the communication monitoring checklists. How to complete the checklists will be discussed so that accurate information will be obtained in order to determine if the expected 6 months progress is communication development has been demonstrated. Further information will be provided to the parents on what can be expected as a result of the communication monitoring process, and how this information will relate to the development of their child. Results of assessments are used to guide planning families goals and making adjustments to language environment. Ø The ultimate purpose of monitoring the child s communication development is to determine if the expected 6 months progress in communication development has been demonstrated. If not, the need for adjustments can be discussed (i.e., adjust intensity of communication used in child s natural environment, add communication features, or explore reason for delays via developmental evaluation. ASSESSMENTS FOR INFANTS/TODDLERS WHO ARE DEAF OR HARD OF HEARING ASSESSMENT: In addition to requirements described under Part C for assessment of present levels in all areas, the developing communication skills of infants/toddlers who are deaf/hard of hearing will be assessed regularly. BASELINE: assessment for receptive and expressive communication skills ONGOING MONITORING: data on receptive/expressive communication will be collected on an ongoing basis EVERY SIX MONTHS AT A MINIMUM: receptive/expressive communication skills will be summarized and/or re- assessed to determine progress. Examples of Tools (that are normed and/or yield age- level equivalent scores): SKI- HI Language Development Scale (receptive and expressive) MacArthur Communicative Inventories (expressive) Other tools yield milestones without age- level equivalents: SKI- HI Checklists for: o Communication and Language o Auditory Skills o Speech Cottage Acquisition Scales for Listening, Language & Speech (pre- verbal, pre- sentence, simple sentence forms) Communication Matrix (for children with multiple disabilities including hearing loss) Early Listening Function (ELF) instrument (www.hear2learn.org)