Children and youth who are deaf-blind require high-intensity, individualized support from a wide variety of educational, medical, and transition services throughout their school years and beyond. Because families are the one consistent presence in their children’s lives over time, this means they have enormous responsibility for understanding and engaging with these services—how they function, what they provide, and how to advocate and secure them, not only for their child, but for the family as a whole.
The National Center on Deaf-Blindess supports state deaf-blind projects and national family organizations to build the knowledge and skills of families so they can effectively engage with agencies, service providers, and other families to meet the needs of their child and family.
Winter 2021 News
Who is best able to tell the story of a child with deaf-blindness? Families know their children better than anyone else. When created by the family (with the child’s input, when possible), a child’s story can be a powerful gift to their educational team, helping them not only understand the child’s history but also their unique preferences, needs, and challenges. And compiling an effective life story can help families better advocate for their child. We hope our latest Key Topic, “Telling Your Child’s Story,” will help you create and share this important information.
Meeting the Needs of Families
Promoting family engagement is a key responsibility of state deaf-blind projects. It includes facilitating parental involvement in education and transition opportunities and providing information and training to help families gain the knowledge and skills they need to:
- Interact with and help their children learn
- Partner productively with service providers
NCDB provides consultation and resources to support state deaf-blind projects in:
- Creating or revising family TA processes
- Supporting culturally and linguistically diverse families
- Working on systems-change efforts to increase the ability of PTIs and other organizations to be responsive to the needs of families of children who are deaf-blind
Tools for TA
Family Engagement Coordinators
Many state deaf-blind projects have family engagement coordinators (FECs)— staff members or consultants—who support and mentor families. Since January 2015, NCDB has coordinated an expanding online community of FECs who meet monthly to share ideas and experiences, receive training, and provide advice to one another about current aspects of their work. In between meetings they connect via an online workspace and email.
In July 2016, the group met in person for a day-long workshop in Texas. One of the activities resulted in the creation of a woven scarf representing the group's connectedness. Learn about the work of FECs by following the scarf's journey across the country.
National Family Organizations
National family organizations serve a crucial role in supporting families through a range of outreach activities and events. They are also the key advocates for improving services for individuals with deaf-blindness.
NCDB partners on many activities with family organizations, particularly those related to providing information and learning opportunities. We also provide technical assistance to the two national family organizations—the National Family Association for Deaf-Blind (NFADB) and the CHARGE Syndrome Foundation—most important to families with deaf-blindness by helping them increase their organizational functioning and fulfill their missions. This involves such things as board development, communication and procedures, strengthening affiliates/liaisons, resources, and consultation on a variety of topics.