Due to the availability of new technologies, 97% of newborns in the U.S. receive a hearing screening test shortly after birth. If a baby does not pass the screening, further testing is done to confirm whether a baby is deaf or hard of hearing (D/HH). As a result, many families learn that their baby is D/HH early in the infant’s life. The information comes at a time of considerable family adjustment to the birth of their child, before they have suspected problems with hearing, and within a medical system that may or may not be closely linked to necessary educational services. Families need quick access to follow-up services and support so that they can foster the child’s communicative development from the earliest stages.
What we know
Most D/HH babies are born to hearing parents who need information and support to adjust to and understand the communication needs of their baby. Families require ongoing services from audiologists with expertise in testing infants and fitting hearing devices (see http://www.ehdipals.org/). They need prompt referral to early intervention (EI) services, which are frequently offered through public schools and/or private sources. This linkage may happen through the audiologist or the newborn hearing screening program. After referral, families may meet with a Services Coordinator, who helps them navigate educational systems, clarify priorities, and address needs. An EI teacher will work with the family in their home. It is essential that EI teachers have specialized knowledge and skills to work with families of infants who are D/HH.
Successful EI programs focus on the family-infant relationship and are typically family-centered. This means that they fundamentally appreciate the impact of the family on the child’s development, and they seek to build on family strengths to promote the infant’s learning.
Family-centered programs respect the rights of the family to be decision makers. Families are encouraged to access both formal and informal supports, including meaningful contacts with other families who have D/HH children and role models who are D/HH.
Early language development is experience dependent – more extensive exposure to language in the home is associated with better child language outcomes. Infants who are D/HH are at risk for language delays if they cannot access the language input, or have reduced or inconsistent exposure to the language of the family. For these reasons, families are supported to optimize the early language exposure in their child’s environment. Rather than directly teaching the child, professionals work in partnership with parents; together they strengthen the capacity of the family to provide a language-rich environment throughout daily routines. These capacity-building approaches seek to promote family confidence and competence in their roles as care providers and promoters of the child’s development.
What we don’t know
In this new EI era, language outcomes are improving for children who are D/HH. This is encouraging, because children’s future academic and social abilities depend on a strong language foundation in early childhood. However, studies continue to demonstrate wide ranges in outcomes; some children thrive while others struggle. Factors that explain these individual differences are not fully understood. It is known that children in families with fewer financial resources lag behind children in more advantaged circumstances. A variety of communication-development approaches are provided and most professionals endorse the need to fully inform families about all available approaches. However, controversy remains about best practices, and families may be in a position of making decisions in the face of differing opinions and limited evidence. Families regularly report that they benefit from family-to-family support experiences and opportunities to interact with role models who are D/HH. In remote geographic locations, some programs are challenged to make this happen for families.
Innovative approaches using technology (e.g., tele-education) are being explored to reduce such disparities in accessing supports. Harnessing technology is important for young families who may seek information and support differently than in the past (i.e., social networking). Successful EI programs employ practitioners with high levels of cultural competence and an ability to flex EI models to meet the needs of families from non-mainstream cultural contexts. They actively support families in the transition from birth-3 services to preschool programs.
D/HH children are capable learners, and they typically do well when families become involved in maximizing their developmental opportunities. Challenges ahead include determining how EI providers can best meet the needs of the diverse array of families with unique cultures, circumstances, values, and goals.
Innovative approaches should be explored to overcome geographic and socioeconomic barriers (see http://tmw.org/tmw-initiative/). All families deserve access to the expertise and resources that will allow D/HH children to thrive.
Posted on April 1, 2014
by Mary Pat Moeller, Center for Childhood Deafness,
Boys Town National Research Hospital
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