2026 Early Hearing Detection & Intervention Conference
March 15-17, 2026 • Jacksonville, FL
3/16/2026 | 11:25 AM - 11:55 AM | Better Late than Never: Lessons Learned from Families of Late-Identified Children | City Terrace 12
Better Late than Never: Lessons Learned from Families of Late-Identified Children
Data and graphs reveal trends, but storytelling reveals lives. Narratives about lived experiences bring human context to statistics, helping stakeholders, policymakers, and the public understand the real-world consequences behind the numbers. Stories illuminate barriers and systemic inequities, transforming complex, sometimes divisive issues into relatable human experiences.
While we routinely highlight stories of children identified through 1-3-6 and loss-to-follow-up protocols, we must ask ourselves: Are we actively seeking out and amplifying the stories of late-identified children? What critical lessons are embedded in these overlooked narratives—and how can they drive meaningful change in our EHDI efforts?
In 2025, deaf student Alexis Jones (age 18) and her family had the opportunity to participate in the Late to the Party: Extraordinary Stories of Hope After Late-Identified Hearing Loss storytelling project. It was during this experience that Alexis recognized the importance of sharing her own experience with late-identification alongside her parents, to increase the sense of urgency for ongoing hearing health monitoring after NHS.
In this presentation, facilitated by parent-advocate Valerie James Abbott, the Jones Family and other families that participated in the project will share some of the common threads connecting their stories to others. They will also describe how the project can offer hope and validation to families and inspire EHDI efforts to more proactively aim resources towards unidentified deaf and hard-of-hearing children between infancy and age three.
- The participant will recite three of the key lessons learned from the Late to the Party: Extraordinary Stories of Hope After Late-Identified Hearing Loss project
- The participant will explain how personal narratives illustrate the real-world consequences of late-identification.
- The participant will determine how their EHDI program can recruit families to share their story and how their program can leverage them.
Presentation:
This presentation has not yet been uploaded.
Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Valerie Abbott
(Primary Presenter,Author), Padapillo PBLLC, valeriejamesabbott@gmail.com;
Valerie James Abbott is a parent-advocate, an award-winning author, and an EHDI-champion who has served as past-chair of the Virginia EHDI Advisory Committee. She works for the Infant and Toddler Connection in Richmond, VA - supporting the needs of families of children with developmental delays and disabilities. She has served on the board of Virginia Hands & Voices and is co-founder of the National Late Onset Hearing Loss Awareness Campaign. Valerie has published several articles online and in print about raising a child with a disability that have gained nationwide attention. Her children’s book Padapillo received a Moonbeam Children’s Book Award and is based on the true story of how her family discovered and came to terms with their daughter's late onset hearing loss.
ASHA DISCLOSURE:
Financial -
• Receives Salary for Employment from Henrico Area Infant & Toddler Connection.
• Receives Royalty options or other ownership interest for Ownership from Padapillo PBLLC.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
Financial -
Financial relationship with Padapillo PBLLC (Owner)
Henrico Area Infant & Toddler Connection (Employer)
Virginia EHDI Advisory Committee (member)
UCSF PCORI Preschool Hearing Screening Study Advisory Committee (member).
Nature: Author of Padapillo, Padapillo (Edición en español), and Late To The Party: Extraordinary Stories of Hope After Late-Identified Hearing Loss
I am employed by Henrico Area Infant & Toddler Connection where I receive a salary.
I serve on two advisory committees, no financial compensation. .
Nonfinancial -
No relevant nonfinancial relationship exists.
Alexis Jones
(Co-Presenter), Nevada Hands & Voices, ajsoclab@gmail.com;
Alexis Jones is an 18-year-old Deaf first-year student from Las Vegas, Nevada, attending Rochester Institute of Technology. She is majoring in Neuroscience with a minor in Criminal Justice. As a dedicated scholar-athlete, Alexis continues to balance academic excellence with athletic achievement, maintaining a 4.3 GPA while excelling in soccer..
Throughout high school, Alexis served as the Student Council Executive Officer, Vice President of Ambassador Student Leaders, and a member of the National Honor Society. She also held a state leadership position as Secretary of the Nevada Association of Student Councils, where she worked closely with peers and educators to promote student voice and civic engagement. She was also a representative on the CCSD Superintendent Student Advisory Council, Alexis met with district leaders to advocate for Deaf and Hard of Hearing (DHH) students and advance inclusion in education.
Beyond the classroom, Alexis has presented at multiple local conferences and workshops, and was featured in the documentary Our World in Our Words, alongside other Deaf self-advocates. Since 2019, she has been actively involved with the Nevada Legislature, testifying and meeting with lawmakers to address issues impacting the DHH community.
As a proud member of the U.S. Women’s National Deaf Soccer Team, Alexis continues to champion diversity, equity, and inclusion. She helps lead inclusive “Adapt and Thrive” soccer camps and has joined efforts calling on U.S. Congress for SafeSport reform to protect all athletes from abuse.
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.
Beth Jones
(Co-Presenter), Nevada Hands & Voices, bethj@nvhandsandvoices.org;
Beth Jones is the Executive Director and Programs Coordinator at Nevada Hands & Voices. Prior to beginning a family, Beth earned her master’s degree in Special Education and worked as an Autism Teacher and Behavior Mentor Teacher. Beth became involved with Hands & Voices when two of her three children were identified as being deaf/hard of hearing and has been a part of Nevada Hands & Voices since 2012. She serves on many state-wide and national committees, teams, and advisory boards as a parent leader to help advocate and support children who are deaf/hard of hearing.
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.