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Family Engagement

Parents of children with deaf-blindness face significant, long-term challenges in acquiring the knowledge they need to effectively engage with school and community systems. In addition, families are widely dispersed across the country, making it difficult to find and maintain supportive connections. This national initiative collaborates with state projects and national family organizations to ensure that families have the support they need to partner effectively with education and service providers and to create a cohesive network of family leaders across the country.

Initiative Lead

Technical Assistance & Support

The national technical assistance within this initiative focuses on facilitation, training, collaboration, and the creation of publicly available tools and information to support and educate families. Opportunities and resources include:

  • The Family Specialist MasterMind Group, an information and support group for state deaf-blind project family specialists 
  • Consultation to state projects on building training and support for families in their states
  • Resources and strategies for building collaboration with state parent centers
  • Families Matter videos stories for engagement and sharing
  • Online study opportunities for families to understand the role of the intervener

Questions related to technical assistance or one-on-one consultations are available with Initiative Lead, Megan Cote.

Initiative Background & Data Facts 
Understand the intent of this national initiative and the unique partnerships it supports to assist families and to develop family leaders.  

Tools for Technical Assistance

Families Matter Stories    

Families Matter video stories

Stories are a wonderful way to share information and experiences. Through this initiative, we are regularly publishing web-based stories about children who are deaf-blind and their families. These stories—told mostly through video by the families— highlight key subjects: communication, literacy, movement, transition, empowerment, and teaming. The stories will be a focus for online discussion and engagement.

Recommended Knowledge and Skills for State Deaf-Blind Project Family Engagement Coordinators   
This document outlines recommended knowledge and skills for individuals who serve in the role of Family Engagement Coordinator for state deaf-blind projects. The primary purpose of having a set of agreed-upon knowledge and skills is to serve as a guide for identifying and designing training opportunities.

Working Together for Families       
State deaf-blind projects and parent centers in each state create alliances to support families. This report highlights collaborative activities between these two types of programs funded by the U.S. Department of Education’s Office of Special Education Programs (OSEP). Although state deaf-blind projects and parent centers have very different work scopes and objectives, they share the goal of helping families partner effectively with early intervention and educational systems.

Family Needs Assessment: Summary Report
This report outlines the results of a family needs assessment conducted by NCDB in 2017. Topics include child and family needs and strengths, experiences with agencies and service providers, experiences with other families, and family supports.

Network Collaboration

Training Opportunities

Supporting Family Specialists

Many state deaf-blind projects have Family Specialists, specific staff members or consultants who support and mentor families. Since January 2015, a growing group of family specialists has been meeting monthly online to network and share ideas and resources. In July 2016, the group met in Texas, prior to the NFADB Symposium, for training and to create action plans to collaboratively improve support and services for families in their states. Contact Megan Cote about joining this group.

Raising Awareness About Deaf-Blindness

NCDB, NFADB, and the CHARGE Syndrome Foundation partner to expand knowledge about deaf-blindness and the education of children who are deaf-blind.
  • The NFADB Symposium in July 2016 offered training for family leaders
  • Follow along the journey with the Family Engagement Coordinator scarf that is traveling around the states to raise awareness!

Family to Family Support

Building Family to Family Communities

The Family-to-Family Communities Project offers a unique way for families to connect, share information and resources, and offer support to one another. Groups meet once per month for 90 minutes via phone and/or video conference (based on group preference). This project was developed by deaf-blind projects in the Southeast who worked with NCDB and NFADB to organize ongoing conference calls for parents of children with deaf-blindness. A summary of the results of the 2014-2015 pilot program that was the start of the communities can be found here.

Grief Support for Families of Children With Deaf-Blindness

NCDB, NFADB and state deaf-blind project personnel have been collecting grief resources for families related to child loss. NCDB is offering a series of web-based, peer-to-peer meetings where parents who have lost a child will have an opportunity to process their grief and learn about coping strategies that have helped others.  Full information can be found at this link.  For additional information, please contact Megan Cote, NCDB Family Engagement Initiative Lead.   

Current Initiative Activities

NCDB : The Research Institute : Western Oregon University : 345 N. Monmouth Ave. : Monmouth, OR 97361
Contact Us: 800-438-9376 |

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