2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
3/19/2024 | 9:40 AM - 10:05 AM | One Meeting,Two Stories:Parent-to-Parent Support From Two Perspectives | Granite A-C
One Meeting,Two Stories:Parent-to-Parent Support From Two Perspectives
Diagnosis of a rare genetic disease can be isolating and confusing. Two parents who have navigated the medical, educational and therapeutic systems to find care for their children diagnosed with CHARGE syndrome will each share the impact of their first connection to one another. Staci Petralba and Penni Echols were connected via self-referral to the CHARGE Syndrome Foundation’s Liaison program and later via Nevada’s Early Hearing Detection and Intervention program’s Family Based Organization referral to Nevada Hands & Voices. Penni will share how supporting families with a new diagnosis using the Guide By Your Side Parent to Parent Support Framework strengthens her own competence, confidence and well-being. Staci will share how early engagement in the Guide By Your Side program influenced her understanding of the support systems available to her family and relationship to the community.
This presentation will encourage parents to become involved in parent to parent support programs as both a supporter and learner. It will also demonstrate the importance of diagnosis specific support and encourage providers to facilitate such a connection.
- Participants will be able to list three benefits of parent to parent support for the supporting parent.
- Participants will be able to list three benefits of parent to parent support of the learning parent.
- Participants will be able to describe how parent to parent support is different from early intervention and why it is important.
Presentation:
3478265_16300PenniEchols.pdf
Handouts:
Handout is not Available
Transcripts:
3478265_16300PenniEchols.docx
Presenters/Authors
Penni Echols
(Primary Presenter,Co-Presenter), Nevada Hands & Voices, CHARGE Syndrome Foundation, penni.echols@gmail.com;
Penni Echols is the Guide By Your Side Coordinator for Nevada Hands & Voices. She has been employed as an Educational Advocate since 2020 and a Parent Guide since 2021. She passionately believes that every child can communicate when they have the right support and a willing partner. She is a graduate of the Hands & Voices Leadership to Leadership program and volunteers as one of the moderators in the H&V DHH Plus Parent Support Facebook community. In addition, she volunteers as a member of the Board of Directors for the CHARGE Syndrome Foundation and as a Member of the Nevada Department of Education’s Special Education Advisory Committee. Penni and her husband Micah live in Las Vegas, Nevada with their six daughters. Their youngest, Martha was born in 2014 with CHARGE syndrome and is deafblind with additional medical needs.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Nevada Hands & Voices.
Nature: Employee.
Nonfinancial -
No relevant nonfinancial relationship exists.
Staci Petralba
(Co-Presenter), None, staci.petralba@gmail.com;
Staci Petralba is an audiologist currently working in a physical therapy practice performing vestibular assessment, diagnostic audiometry, and fitting amplification. She obtained her Bachelor of Science degree in communication disorders with a minor in American Sign Language from Central Michigan University in 2011 and her Doctorate of Audiology degree from East Tennessee State University in 2015. Staci and her husband Noah live in Las Vegas, Nevada with their two children, Addison who is 4 and Benjamin who is 2. Benjamin was born with CHARGE syndrome and is deafblind with additional medical needs.
ASHA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.