2022 Early Hearing Detection & Intervention Virtual Conference
March 13 - 15, 2022
The CHARGE Syndrome Foundation State Liaison Program - You Can Do It Too!
The State Family Liaison Project is a model of collaboration to improve the Foundation’s outreach to both families and professionals at the national level. (https://www.chargesyndrome.org/for-families/get-support/) Liaisons are adults with a family member diagnosed with CHARGE Syndrome who volunteer to work within their state of residence OR special social/cultural sphere to build relationships, network, collaborate and disseminate information. They provide family-to-family support for newly diagnosed families and ensure connection to state deafblind projects and other vital medical, educational and language resources. This program is volunteer based with a minimal budget that has found success in easing social isolation of families and improving the self-efficacy of both liaisons and referred families.
The poster presentation will show:
The structure of the program, including referral dissemination and information sharing
Training and supervision model
Highlight program successes
List future areas of growth
Viewers will be able to scale the program to fit the needs of their population. We hope to help mobilize other family based organizations to provide diagnosis specific F2F support. It will also inform providers about this resource for use with families who have a child with CHARGE Syndrome. Every family deserves to know they are not alone.
- mobilize other family based organizations to provide diagnosis specific F2F support
- inform providers about this resource for use with families who have a child with CHARGE Syndrome
- improve the self-efficacy of both liaisons and referred families
Poster:
3353554_15013PenniEchols.pdf
Presenter: Penni Echols
Penni Echols works with Nevada Hands & Voices, as an ASTra Advocate in the Advocacy, Support, and Training program and as a Parent Guide in the Guide By Your Side program. She is a graduate of the 2021 Hands and Voices Leadership to Leadership (L2L) Program. Penni is a Lifetime member of the National Family Association for Deaf-Blind (NFADB) and is a NFADB Ambassador. She volunteers as the Nevada Parent Liaison for the CHARGE Syndrome Foundation and serves on their Board of Directors. Her family lives in sunny Las Vegas, Nevada. She and her husband have six daughters; their youngest was born with CHARGE Syndrome in 2014.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exist.
Nonfinancial -
No relevant nonfinancial relationship exist.