Family Experiences and Needs

Each year, NCDB compiles the National Deaf-Blind Child Count Report, which determines the number of children, age birth through 21, who are deaf-blind. The report includes data on demographics, types and severity of vision and hearing losses, causes of deaf-blindness, types and prevalence of additional disabilities, and educational placement and services. Unlike other identified disabilities, nearly 90% of children on the child count have one or more additional disabilities, and about 30% have four or more. Just over half of children identified as deaf-blind have complex healthcare needs. Likewise, from 2010 to 2018, an average of 89 children died annually. Altogether, the report data confirms the intense medical needs of the deaf-blind population. Access to highly-trained medical personnel is essential for early identification of children who are deaf-blind and for referral to the services they need.

Attachment and bonding can be a challenge for families of children who are deaf-blind. Families often experience heightened stress due to many factors, including grief, feeling overwhelmed, and the complexities of caring for and attending to their child’s critical medical needs. Intent focus on the child's needs coupled with emotional and psychological stress can, at times, make family members less sensitive and attentive to their child's social and communication cues (Reda & Harsthorne, 2008). Despite the ongoing stress, families must learn how to best support their child’s communication development, determine what information the child is not receiving, and learn how to create a plan for sharing what they know with the child’s educational team (Sheriff & Hallak, 2015). Without these efforts, the family might establish a precedent for low expectations (Cmar et al., 2018).

Kyzar et al. (2020) reported that several factors significantly affect the quality of life for families of children and youth who are deaf-blind. Some of these include family income, marital status, service/support adequacy, health services, access to information, education, friend and family support, child care services, and service coordination. When there are limited or inadequate services, family quality of life and mental health can be directly impacted (Hintermair, 2000). The accessibility of community activities and facilities further affects their ability to have recreation and leisure time as a family (Waters & Friesen, 2019). Moreover, the success of the individual who is deaf-blind is directly impacted by the lived experiences of the family (Anthony, 2017; Cmar et al., 2018).

When a child receives a diagnosis of deaf-blindness, the entire family unit is impacted. Taking time to address the needs of the child in the context of their whole family (Correa-Torres et al., 2016; Pancsofar et al., 2019; Travers et al., 2020) will ensure greater outcomes not only for the child but for each member of the family. This can be accomplished through unbiased conversations with the family. Based on an understanding of their needs and where they are in their journey, you can provide a safe space for the family to share and acknowledge their unique life experiences and complexities as a family with a child who is deaf-blind. This is the starting point for authentic family engagement.

When families are engaged in their child’s learning and development, research indicates that children have a more positive attitude toward school and better attendance, stay in school longer, experience more school success, and experience improved lifelong health, developmental, and academic outcomes (Henderson & Mapp, 2002). For families of children who are deaf-blind, implementing family-centered practices prepares family members to demonstrate increased advocacy and leadership skills, involvement in planning for their child, and effective teaming skills. Additionally, families are empowered to use self-determination strategies and effective communication with their child.