Family Experiences and Needs

Keywords: family engagement, complex needs, communication, support, quality of life, National Deaf-Blind Child Count, additional disabilities, attachment, bonding, mental health, outcomes

Abstract: Excerpt from The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind. The following is part of the Family Engagement Report: The Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind. While most of the Family Engagement Report reflects the experiences and needs of all families who have children with disabilities, the research-based section excerpted below is unique to families with children and adults who are deafblind. For the full list of references, follow the National Center on Deaf-Blindness References link in the References section at the end of the article.


Raising a child who is deaf-blind can present exceptional challenges because of the rarity and diversity that make up the population of individuals who are identified as deaf-blind. Specifically, families bear the unusual responsibility of understanding their child’s unique needs and educating others about ways to engage and support them. This is an ever-evolving process as the child ages and new providers (e.g., medical, educational, community) come in and out of their life. Common areas of need include compounding complex needs, bonding and communication development, educational support, quality of life issues, and family-centered practices.

Compounding Complex Needs 

Each year, the National Center on Deaf-Blindness (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.

Bonding and Communication Development

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).

Educational Support

According to the 2017 National Deaf-Blind Child Count, “students with deaf-blindness receive special education services more frequently under the category of multiple disabilities (36.2%) than under the separate categories of deaf-blindness (16.5%), hearing impairment (10.0%), or visual impairment (5.5%)” (as cited in Kyzar et al., 2020, p. 51). In 2019, only 25% of students with deaf-blindness were placed in the general education setting 40% or more of the day. A lack of both funding and educational personnel with training in deaf-blindness often results in insufficient services and individualization to meet the needs of the deaf-blind learner (Kyzar & Summers, 2014; Waters & Friesen, 2019). Additionally, due to the complexities of the student and deficiencies in training and disability-specific support, education for children who are deaf-blind is often delivered through a deficit-based model rather than a strength-based model (Turnbull et al., 2007). Furthermore, transition planning across the entire education system places responsibility on the family to ensure consistency and training across time and providers.

Parents of children who are deafblind have unique challenges before, during, and after Individualized Education Program (IEP) meetings. Often there is a lack of professional knowledge about deafblindness, thereby requiring families to gain and share knowledge. Because parent knowledge and advocacy are essential roles, there is a need to understand better how parents advocate and share knowledge during the IEP meeting” (McKittrick, 2019).

Quality of Life

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).

Family-Centered Practices

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.


National Center on Deaf-Blindness. (2022). The value of family engagement: Identifying       unique needs and priorities of families with children who are deaf-blind 

National Center on Deaf-Blindness. (2022). Family experiences and needs. The value of family engagement: Identifying unique needs and priorities of families with children who are deaf-blind. 

National Center on Deaf-Blindness. (2022). References. The value of family engagement: Identifying unique needs and priorities of families with children who are deaf-blind.

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