Family members are the most important people on the educational team and in the life of a child or youth with deaf-blindness.
They are the one consistent presence as children move from early intervention to school, and then transition to adult life. Educational settings change and practitioners come and go, but the family is always there. In this section of the website, you will find resources to help you:
- Connect to agencies and organizations
- Learn about deaf-blindness and key topics for families
- Access family stories
- Find events
Services and Organizations
Reaching out to helpful people and places is essential for children with deaf-blindness and their families. A range of services are available that provide information, referrals, services, and opportunities to interact with other families.
Get to know your state deaf-blind project
If you are a family member of a child with deaf-blindness and have not yet contacted your state deaf-blind project, you should do so as soon as possible. The types of services offered vary from state to state, but typically include resources, guidance, and annual workshops or other events. Most state deaf-blind projects include a staff member in the role of family engagement coordinator who works directly with families.
Families report a high need for information to improve their understanding of deaf-blindness (e.g., communication, impact of vision and hearing loss on learning), as well as the knowledge and skills they need to partner with educators and advocate for their childrens' needs (NCDB, 2017). Sorting through information on the internet can be overwhelming, however, so we've organized a selection of high-quality information on this website—information about deaf-blindness, key topics for families, and family stories.
Family-to-Family Communities Project (F2FC)
F2FC brings families together to connect, share information and resources, and offer support to one another. There are typically a number of communities (groups of 8 to 10 family members) on a variety of topics that meet once per month via phone or video conference. Registration opens during the summer and the meetings run through the subsequent school year.
Registration is now open for the 2020-2021 season of calls. Please register by August 15, 2020.
This summer there are also calls for families to support one another during COVID-19.
CHARGE Syndrome Webinar Series: Click to Talk Fridays
The CHARGE Syndrome Foundation is hosting a webinar series based on the NCDB Professional Development Series on Deaf-Blind Strategies called Click to Talk Fridays. Every Friday, following the NCDB webinar, they host a webinar to discuss how the topic can be applied to children with CHARGE Syndrome.