Recognizing the Needs of Families of Children and Youth Who Are Deafblind

By Correa- Torres, Silvia M.; Bowen, Sandy K. | American Annals of the Deaf, Fall 2016 | Go to article overview

Recognizing the Needs of Families of Children and Youth Who Are Deafblind


Correa- Torres, Silvia M., Bowen, Sandy K., American Annals of the Deaf


In the Individuals With Disabilities Education Act (IDEA), deafblindness is defined as a concurrent loss of vision and hearing in students that "causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness" (Sec. 300.8[c][2]). When compared to other populations with disabilities, the number of students who are deafblind is small; indeed, deafblindness is the lowest-incidence disability categorized in IDEA. There is great variability within the small number of children diagnosed as deafblind. Many have usable hearing and/or vision, and most have additional medical needs and intellectual and/or physical disabilities. Because it affects the two senses people use most to acquire information, deafblindness creates challenges for learning and education, communication, and social interactions, among other aspects of daily life.

A diagnosis of deafblindness can have a profound impact on a child's family members and other caregivers. However, evidence-based practices and literature related to the needs of families of children and youth who are deafblind is very limited. The purpose of the present article is to synthetize the literature related to families of students who are deafblind and the supports needed by these families. We address the topics of the impact of the diagnosis on the family, supports needed by the family (including siblings of the child who are deafblind), the contributions of siblings, and diversity issues (including those related to linguistic, cultural, and economic diversity). We also list online resources for professionals related to family needs.

Because the literature concerning families of children with deafblindness is minimal, and because we wanted to learn more about the topic of families, we expanded our review of the literature to comprise children with other low-incidence disabilities and their families, including children who are blind or visually impaired (B/VT), children who are deaf or hard of hearing (D/HH), and children with significant support needs. We understand and recognize that the impact of these disabilities is unique for each child and family, but we decided to compare the literature on other low-incidence disabilities to the few articles we found specifically on deafblindness and point out similarities.

The Impact of Deafblindness on Families

When families are expecting the arrival of a child, they have dreams and expectations of how the life of that child will be. Often, these dreams and expectations dissolve when the family is told that the child has different needs. Families may experience a grief response, not only when the child is first diagnosed with the disability but at different times throughout the child's lifetime. Family members and other caregivers need to grieve the loss of these aspirations so that they can begin to have new dreams for their child (Taub, 2006). Although the grief cycle experienced by families of children with disabilities has been compared to the death grief cycle, Kurtzer-White and Luterman (2003) suggest that the physical loss of a loved one is significantly different from losing the "ideal" child parents expect to have. However, there is some controversy about the process that family members and other caregivers go through when they first hear about the new child's disability

For many years, the identification of a disability was thought to be a devastating event in the life of a child that could only affect the family negatively. This is because families of children with disabilities have to deal with uncertainties about their child's health, education, and future, and the additional challenges that caring for a child with disabilities bring (Barnett, Clements, Kaplan-Estrin, & Fialka, 2003). Having a child with a disability may not only affect the family emotionally; there may be many other stress factors such as financial burdens and the need for extended care. …

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