Maine Educational Center for the Deaf and Hard of Hearing
Factor 2 Program Highlight
The Early Childhood and Family Services (ECFS) program provides services free of charge to families with children birth through age 4 who are, or are suspected to be, deaf or hard of hearing. The ECFS early intervention specialists come from varied backgrounds and specialty areas and offer families a multidisciplinary approach to support. The team values the importance of family connections and families learning from each other. The program believes its success lies in its philosophy of flexibility; the program believes that children and families are best served when families guide the program by their questions, and conversations are entered into around those questions. The program provides information to families and professionals statewide, supports the choices families make to benefit their children, and assists them with identifying the resources that will help them meet the individual needs of their infant or young child. The program is formally embedded into each child's Individualized Family Service Plan (IFSP) team and provides opportunities for statewide networking for families, providers, and agencies.
There are several different service delivery models that families may access, including models for in-depth consultation, offering a primary service provider for early intervention, support for children with conductive decreases in hearing sensitivity, and support for those families who suspect their child may be deaf or hard of hearing. These models vary with regard to number of visits and nature of support. Children with all types of hearing abilities, including suspected, conductive, unilateral, and fluctuating, and children with varying additional special needs, have access to the variety of services offered. For more information about the services provided, see ECFS.
Regional family gatherings occur throughout the state for families to learn from different specialists and from other families. Parent-infant-toddler playgroups occur in the southern part of Maine and provide opportunities for families to connect, observe, and participate in a variety of language facilitation strategies, children to play, and for questions to be answered. Audiologists, speech-language pathologists, teachers of the deaf, and Deaf mentors provide resources and are available for consultation throughout the morning. The weekly playgroups support a continuum of communication approaches. The groups include modeling of strategies using play-based centers to facilitate listening and spoken language development and American Sign Language (ASL) development. An ASL and spoken English story time gives families and children an opportunity to learn strategies on how to read to their children in any modality. For more information, see Parent, Infant, Toddler Program and Parent, Infant, Toddler Blog.
The ECFS team members collaborate with professionals from a variety of programs and agencies. ECFS team members are embedded into Maine's Part C process, and they work collaboratively with the Part C agency (Child Development Services). The ECFS provider is also on the Part C Early Intervention team as the regional specialist for children who are deaf or hard of hearing. This provides a consistent statewide model of support to both families and the lead Part C agency in Maine. The director of ECFS has a designated seat on the Board of the State EHDI program as a representative of the part C agency, Child Development Services, further tightening the link between ECFS, early intervention and identification, and Part C Services post-identification.
Maine's Part C program recognizes the unique skills that the ECFS team has to offer families and professionals throughout Maine. If a baby is referred directly to ECFS, the program connects with Part C to ensure the family is also referred for Part C services. A joint visit will be offered to ensure the family has access to professionals who are: 1) knowledgeable in working with infants and toddlers who are deaf or hard of hearing, 2) trained and experienced in guiding families related to facilitating early language and communication, 3) experienced in promoting family-child attachment and bonding, 4) experienced and trained in explaining the various language and communication approaches and strategies for families to explore, and 5) understanding of the varied benefit of listening and visual technologies.
ECFS and Child Development Services (Part C) work as a team to provide family assessment and developmental child assessment that leads to a child's IFSP. Once the IFSP is written and the family's outcomes are defined, a primary service provider is selected. Often the ECFS early intervention specialist will be the primary service provider written into the IFSP for the first months until the family has met their outcomes related to:
- learning about the child's hearing abilities,
- learning early communication strategies,
- learning about possible listening technologies for their child's hearing abilities,
- learning about varied communication approaches (and how varied approaches and strategies match the characteristic of their child), and
- making informed choices regarding language and communication approaches for their child.
As ECFS early intervention specialists work with families in the exploration of communication approaches, an emphasis is placed on promoting strategies to support unhurried early family-child attachment and bonding. A Maine EHDI newborn infant hearing screening binder, developed by the EHDI advisory board, is used in the process of guiding families in exploring possible approaches and strategies. Early in the process, families are connected to other families who have chosen a variety of different communication approaches and to a variety of professionals and programs. The goal is to guide parents in exploring different approaches so that they can understand what varied choices might mean for their child and family. Families are encouraged to think of this time as an exploratory time and know that their initial "choice" doesn't have to be forever; they can change, add, or delete at any time. Families are also encouraged to try different approaches and see what they feel fits their child and family best and to meet deaf and hard of hearing adults.
Once a family has gone through this process and feels they are ready for a "starting point," they are walked through a communication planning process where families document (by writing themselves) their wishes for their child, the process they have taken, and the beginning steps they wish to take. This is a powerful process of ownership for families.
Maine's early intervention process is unique in guiding families to explore modalities, technologies, and language and communication strategies to support development of early linguistic competence. The program takes time with the family and does not hurry the process. The ECFS team has created a 6-visit protocol which embeds areas of information sharing for families that ensures all families throughout Maine receive the same information but allows for flexibility to follow the family's lead. The program focuses on attachment, bonding, and encouraging lots of emotional support. By establishing a relationship with the family and supporting the relationship process between parent and child, the program has observed more family involvement, an increase in extended family involvement, and empowerment of families. With this model, parents are the experts and we are the support and coaches.
Another unique aspect of the program is that in the multidisciplinary team, all team members are trained to be able to fully explain and model all communication approaches. Each early intervention specialist is well versed in discussing approaches in a neutral way. Different aspects of the families' lives are discussed and how to support communication and early linguistic competence throughout everyday routines and experiences.
The Part C process in Maine consists of a developmental assessment, which is usually the Battelle Developmental Inventory. A team of professionals administers this assessment. Typically, a speech-language pathologist, special educator, or teacher of the deaf is one of the assessors, along with a professional specializing in motor skills. The early intervention team for Part C also involves an early childhood specialist who specializes in hearing and a speech-language pathologist in all of their meetings to provide input and support for early intervention coaches. These professionals are also available for joint home visitation.
Support is available for families using both visual approaches and listening and spoken language approaches. Speech-language pathologists and/or orally trained teachers of the deaf work collaboratively with the Part C programs to provide listening and spoken language support to families who are interested in promoting outcomes in this area. Listening and spoken language specialists, speech-language pathologists who sign, and speech-language pathologists who have expertise working with children with additional special needs are all an integral part of the Early Intervention Extended Team in Maine that ensures families have varied expertise available to them. Speech therapists and teachers of the deaf who have specific training in listening and spoken language are on the ECFS team to provide ongoing support, training, and coaching to families, professionals, and the ECFS team. An educational audiologist on the team offers statewide support as well.
The ECFS team also includes deaf and hearing staff trained in all visual language approaches who are able to support families in gaining a clear understanding of visual communication as well as offer strategies for increasing visual language for young children. There are varied supports for families to learn ASL and meet Deaf adults. A Deaf Role Model Program is available that offers families the opportunity to meet deaf and hard of hearing adults with different experiences and varying educational backgrounds. An ASL Family Training program is also available to provide families with a Deaf mentor (deaf adult) who makes regular visits to the home to facilitate family ASL development and support family understanding of the cultural aspects of being deaf. The Maine Educational Center for the Deaf and Hard of Hearing (MECDHH) offers ASL classes in which course content is driven by the families' needs. Participants have the choice of participating in person in classes at MECDHH or via distance technology utilizing Distance Learning Centers around the state or other convenient remote session programs like Skype, ZOOM, GoToMeeting, and Adobe Connect. For more information, see ASL and Deaf Mentor support for families.
A grant through the Rural Utilities Services (RUS) program allows ECFS to provide technology to local school districts and agencies throughout New England that work with Maine families who have children who are deaf or hard of hearing. These partners include Boston Children's Hospital, Clarke School for Hearing and Speech, hear ME now, and the National Institute for the Deaf. The distance technology, Tandberg systems, allows families and professionals to access services from all of the above agencies and the MECDHH in the comfort of their home or at a local school. For more information on this grant and possible grant opportunities, see Rural Utilities Services.
Some areas addressed in the grant include:
- Enhanced family support. As some families live four to five hours away from consultants, distance technology provides the opportunity to provide follow-up to face-to-face interactions. It is critical to not have technology replace personal home visitation, but it works beautifully as a supplement.
- Development of family skills in facilitating language and communication. Training currently offered includes: listening and spoken language, ASL family training, Cued Speech family training, and primary coaching opportunities in all modalities via distance technology to families who live in very remote areas of Maine. This technology has allowed families more opportunities to gain the skills necessary to facilitate their child's language and communication.
- Cochlear implant team connection. Boston Children's Hospital, one of the cochlear implant sites for children in this program, was invited to be a part of the grant to support distance education. As part of this grant, the hospital has the necessary technology to have distance meetings providing support to children and their families and to professionals on a variety of issues.
- Webinar series. Distance technology is used to provide a series of webinars for families and professionals statewide. The first webinar focused on the initial steps for families to take after their baby has been referred following their newborn hearing screening. The focus of the webinar is to encourage families to get the help and support they need. Both families and professionals are included in the webinars so individuals can connect and feel it is relevant to them.
- Family-to-family support. Families are connected to other families statewide, and playgroups are brought together so the families can interact with other families. Workshops for families on different topics have brought groups together at two satellite offices in central and northern Maine with the main office in southern Maine.
A major strength of the program is the memorandum of understanding with Maine's Part C program, which has embedded the ECFS services into the Part C process for all Maine's deaf and hard of hearing children. Having one early intervention process that is consistent statewide and ensures families receive information in a timely but family-centered manner is another strength. The involvement of a multidisciplinary team of family-centered professionals and their ability to follow the lead of the family should also be noted as a significant strength. Other strengths include: continued, ongoing, flexible family support, schedule flexibility, approach neutrality, strong ties with regional medical communities and community agencies, and strong relationships with families. Another strength is that the program focuses on children from birth to age 5, which allows for ongoing support to families through major transitions in the development of their young child. Maine is also fortunate to have a Guide By Your Side, a parent-to-parent support program that our program is able to connect families to for support from other parents.
One challenge is to balance a family's need of being a family first while at the same time imparting information that is integral to moving the process forward of understanding the unique needs of their child who is deaf or hard of hearing. It is important to move the process along in a timely manner, but taking the families' lead in this process is critical.
ECFS early intervention specialists are trained in using strategies that recognize that each family will go through the process at their own pace. While early home visits are spent on the importance of attachment, consultants are trained to skillfully impart information integral to moving forward with necessary components of the intervention process. At the same time, the ECFS early intervention specialists are cautious not to overwhelm parents with too much information and are responsive to parent requests to postpone visits if they are indicating the need to slow down the process. It is sometimes challenging to encourage professionals to allow the family to "slow the process" a bit and impart to the families that while there is no immediate hurry to make a communication modality decision, it is important to begin using communication strategies to bond with their baby.
ECFS's advice to other programs trying to establish a similar model would be to allow for time--time to develop the model; time to train staff; time to build relationships with Part C in your state, with providers in your state, and with families. Be collaborative with the families from the very beginning, following their needs. If possible, provide continued relationships and support to families from birth to 5 years of age. Enlist the use of consultants who have skills to:
- provide neutral responses;
- listen to family needs;
- guide, not tell, families;
- provide services and supports without a rigid agenda;
- clearly explain all available communication approaches, technologies, and strategies; and
- connect families to other families who have children who are deaf or hard of hearing to share their experiences with different approaches.