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Family Engagement

Children and youth who are deafblind require high-intensity, individualized support from a wide variety of educational, medical, and transition services. Because families are the one consistent presence in their children’s lives, they need to know how these services function, what they provide, and how they can be secured. We support state deafblind 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 best meet the needs of their child and family.

Initiative Lead

Jana Villemez

Meeting the Needs of Families

Promoting family engagement is a key responsibility of state deafblind 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 deafblind 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 deafblind 

Family Engagement Coordinators

Many state deafblind 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 deafblindness. 

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 deafblindness 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. 

Logos for the National Family Association on Deaf-Blind (NFADB) and the CHARGE Syndrome Foundation.