You are a group member!
Initiative Background and Data Facts
This page was last updated on Jul 20, 2016 at 9:14 am
The involvement of families in the education of their children is critically important. Research focused on families tells us that when parents are involved with their child’s education, good things can and do happen. Families want the best for their child and to trust that service providers and educators will have the information and skills to help their child learn and grow.
For more than a decade, and in partnership with state deaf-blind projects throughout the country and the leading national family organizations—the National Family Association for Deaf-Blind and the CHARGE Syndrome Foundation—NCDB has endeavored to support the self-empowerment of parents of children who are deaf-blind and to assist them in acquiring advocacy and leadership skills. In continuing to build knowledge, community, and the capacity of TA providers to mentor families, initiative activities rely on strong collaborative partnerships. We are reaching out to state parent centers across the country. We are doing targeted webinars with family organizations. We are supporting the development of a community of individuals serving in the role of Family Engagement Coordinator for their state deaf-blind project.
Data Facts - The Diversity of the Population Points to Importance of Family Support and Education
Families, and by extension Family Engagement Coordinators, face innumerable issues daily. In some cases there are local, state or national supports in place to rely on, in others cases there are less opportunities for resources, leaving families and providers feeling isolated and alone. Data from the Annual Deaf-Blind Child Count brings into focus this circumstance.
The etiologies or causes of deaf-blindness bring unique issues and challenges. Some are relatively more common, such as CHARGE syndrome (1000 children and youth), Down syndrome (310), Usher syndrome (350) and Cytomegalovirus (340). Some are very rare, with less than ten individuals nationally having etiologies such as Batten disease, Prader-Willi and Kearns-Sayre syndrome and also a dual sensory loss. Families need the knowledge and skills to navigate the array of medical systems they will encounter as a result and effectively advocate for their child.
As children age they and their families will encounter a number of educational settings and systems. From Early Intervention (560 infants and toddlers) through pre-school (1000 children), elementary school (2800 children), middle and high school (2900 youth) and beyond (1500 young adults). Not only do families need knowledge and skills to successfully advocate for their child within each of these systems, but also within the variety of educational settings within these systems. From home (10%) to regular education classrooms (60%), to separate classrooms and separate schools (20%), to residential facilities (5%) and hospitals and nursing homes (5%), each setting is unique and requires somewhat different knowledge and skills.
Children and youth live with in a variety of settings and have many different family configurations around them. While the vast majority do live with their parent(s) in their home (90%), they also live with extended family members (3%) and with foster families (2%). They also live in residential facilities, group homes or in pediatric nursing homes (5%).
National and state project efforts to provide a cohesive system of supports for families of children with combined hearing and vision loss is important work.