2027 Early Hearing Detection & Intervention Conference
March 22-24, 2027 • Bellevue, WA
3/17/2026 | 1:45 PM - 2:15 PM | Family Liaisons: Lessons on Family Leadership and Empowerment | City Terrace 8
Family Liaisons: Lessons on Family Leadership and Empowerment
In the realm of early hearing, intervention, and deaf-blindness, strong family leadership transforms not just individual outcomes but whole communities. The CHARGE Syndrome Foundation’s State/Family Liaison Program is a living model of this transformation. Comprised of parents, siblings, and adults with CHARGE, our state liaisons serve as connectors between families, state Deaf-Blind projects, and the Foundation, helping to share resources, identify needs, and foster peer support at the state level.
This session will share concrete data and real stories from our Liaison Program — how including siblings and CHARGE adults enriches the network; what leadership skills we support; the structures we’ve built (training, communication platforms, role definitions); and measurable outcomes: family reach, connection, empowerment, and systemic change. Participants will gain actionable strategies to replicate or strengthen similar leadership programs: recruiting diverse liaisons, defining roles, maintaining motivation, and building collaboration with state, local, and national entities. Attendees will leave empowered with tools, and lessons learned so they can launch or refine their own family leader liaison initiatives in their states or regions.
- Describe how building a liaison program that includes parents, siblings, and adults with CHARGE contributes to more robust family leadership and community connection.
- Identify structural elements and supports (training, communication, role clarity) needed to successfully recruit, sustain, and empower state/family liaisons.
- Apply lessons learned from the CHARGE Liaison program to design or strengthen liaison models in local or state early hearing & intervention/deaf-blind programs.
Presentation:
View Presentation File
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Lourdes Quintana
(Primary Presenter), CHARGE Syndrome Foundation, lourdes@chargesyndrome.org;
Lourdes, born and raised in Bayamon, Puerto Rico, has dedicated her life to supporting families of children with different abilities. Her passion for advocacy comes from her personal experience growing up with a sibling who had Cerebral Palsy.
She earned a Bachelor’s in Clinical Psychology from the University of Sacred Heart and began her career leading wellness programs for young children. Lourdes later completed a Master’s Degree in Clinical Psychology at Albizu University.
In 1999, she moved to Orlando, Florida, where she worked as a Mental Health Therapist. She then joined the Developmental Center for Infants and Children, specializing in early intervention services for children with developmental delays. Lourdes helped families integrate strategies to support their children’s development in areas such as language, motor skills, and social-emotional growth.
Over 16 years, she partnered with organizations like Silent Hope, the Down Syndrome Foundation, and United Cerebral Palsy, earning recognition, including the 2012 Don Quijote Award for Professional of the Year. Lourdes has also served on several boards, advocating for better funding for essential services.
Currently, Lourdes works as the Outreach and Engagement Manager for the CHARGE Syndrome Foundation, helping families and professionals access critical resources and support. She is part of the CHARGE Network for Deafblind International and has led multiple initiatives to engage Spanish-speaking families.
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.