Bridging the Gap: Support for Children Who Are Late Identified/Late Implant & Their Families
Partners in Hearing provides a grant to Clarke Schools for Hearing and Speech to address some of the barriers facing families of late identified/late implanted children.
The implementation of Universal Newborn Hearing Screening has had a profound impact on the identification of hearing loss at birth. For those early identified infants with severe to profound hearing loss, their parents and medical team may decide for them to have cochlear implant surgery and access to sound as early as 7 or 8 months of age. Both prior to implant surgery and after, their parents also receive critical emotional supports, information and coaching from other parents, therapists and interventionists at Clarke. That early auditory access, coupled with listening and spoken language therapies and services, enable those infants to keep up with typical development and reach their cognitive potential.
Nevertheless, as many as half of all children with permanent hearing loss will not be identified through newborn hearing screening. When children are identified later than infancy, they have the added challenge of catching up on what has been missed, developmentally, and keeping up with the developmental milestones appropriate for their age. Their parents are often caught completely off guard, having been reassured that their baby’s hearing was fine after passing newborn hearing screening. As children approach age 3, the public systems that are designed to support children with hearing loss shift from a focus on the family to issues related to school readiness. Parents essentially have to grieve/process news of their child’s diagnosis, learn about hearing loss, technology, surgery, and language approaches and make decisions that will impact their futures without information or support. This is often exacerbated by issues associated with lower socioeconomic and education levels.
Partners in Hearing’s grant to Clarke will make it possible to ensure that the critical elements of support for parents of younger identified children are available to parents of late identified/implanted children. These supports will vary based on individual family needs and may include: access to teleservice, whereby parents can supplement school-based therapies, and videoconference to speak with the school support team; backup/loaner cochlear implant equipment so that malfunctioning items can be immediately replaced; and easier access to transportation for parents to be able to attend workshops with professionals, parent support groups and other events. Ultimately, the goal is to empower parents to effectively meet their child’s development of language and listening skills and to advocate on their behalf.
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