Empowering Families in EHDI

Empowering Families in EHDI – The Impact of the Family Leadership in Language & Learning (FL3) Center (2017–to present)

By Lisa Kovacs, H&V Headquarters

Introduction: Families at the Heart of EHDI Systems

Early Hearing Detection and Intervention (EHDI) programs were established to ensure newborns are screened for hearing loss by 1 month, diagnosed by 3 months, and enrolled in early intervention by 6 months of age. Over time, it has become increasingly clear that EHDI’s ultimate purpose is not just about tests and timelines—it exists to improve the well-being of babies and their families. In fact, engaged and informed families are now recognized as central to the success of EHDI programs and to the optimal outcomes of children who are deaf or hard of hearing (DHH). This means that beyond the medical and technical aspects of screening and diagnosis, the human element—parents, caregivers, and family support—play a pivotal role in how children with hearing differences grow and thrive.

Public health data reinforces this point. For example, a 2018 CDC report noted that about 1 in 4 infants who do not pass their newborn hearing screen are “lost to follow-up” – meaning they don’t receive timely diagnostic testing. Often, this gap is not due to a lack of technology or expert clinicians but rather challenges in connecting with and supporting families. When families feel overwhelmed, uninformed, or unsupported after a newborn refers on a hearing screen, critical time can slip by. Conversely, when families are actively engaged and receive timely support (reliable information and parent-to-parent support), they are far more likely to follow through with next steps and access early intervention. Research consistently confirms that parental involvement is one of the most reliable predictors of a child’s developmental success, including language, social-emotional, and academic outcomes. In short, EHDI is a team effort, and families are the cornerstone of that team.

Family Leadership and Support: Key to Child Outcomes

Recognizing the family’s role, EHDI systems have increasingly embraced family-centered practices and family leadership. The Joint Committee on Infant Hearing (JCIH) – a leading body that sets EHDI guidelines – explicitly includes family engagement in its principles. JCIH’s Early Intervention guidelines emphasize that “equitable partnerships between families and early intervention programs and systems are critical to the success of EHDI programs and the achievement of optimal outcomes for children.” In other words, families must be viewed as partners in every sense: in decision-making, in program design, and in service delivery. When families and professionals work with each other (rather than professionals doing things to or for the family), better results follow. This philosophy is echoed across healthcare and education. A joint policy statement by the U.S. Department of Health and Human Services and Department of Education asserts that “strong family engagement in early childhood systems and programs is central — not supplemental — to promoting children’s healthy development.”

But what does family leadership look like in practice? At its core, it operates on multiple levels. Hands & Voices (H&V) – a nationwide parent-driven organization supporting families of DHH children – describes family engagement as a three-tiered model: supporting one’s own child, supporting others (parent-to-parent), and engaging in the system through advocacy and leadership (systems leadership).

At the individual level, empowered parents actively participate in early intervention sessions, communicate with providers, and make informed choices for their child’s communication, language, and education. This involvement has a direct positive impact on child outcomes – studies have linked it to stronger language development and social-emotional growth in DHH children. At the parent-to-parent level, connecting families with others who have “been there” provides emotional support and practical knowledge that professionals alone cannot offer. Many states/territories facilitate this via family support programs (often in partnership with organizations like Hands & Voices, Family Voices, or other parent-to-parent networks), pairing new parents with veteran parents who have received training to provide support to other families. This kind of support mechanism isn’t just a feel-good addition; it’s required as part of EHDI programs HRSA funding requirements, underscoring how essential it is considered. In addition to providing direct support to families, at the systems level, family leaders serve on EHDI advisory committees, help design parent resources, train providers in family-centered care, and provide vital input from the family perspective to the EHDI system. The bottom line is that when parents and family members take on leadership roles, the entire system becomes more responsive and effective. Family leadership is not an afterthought; it is intentionally interwoven into high-quality EHDI systems.

The FL3 Center: Building a National Family Support System

By 2017, the momentum for family engagement in EHDI had led to the creation of a dedicated national center to coordinate and strengthen these efforts. The result was the Family Leadership in Language and Learning (FL3) Center, launched in April 2017. Hands & Voices was selected to lead this center through a cooperative agreement with the Health Resources and Services Administration (HRSA), reflecting H&V’s stature as a leader in parent-to-parent support. The purpose of the FL3 Center was straightforward: “to increase family engagement and leadership and strengthen family support in EHDI systems of care to enable families to optimize the language, literacy, and social-emotional development of their children who are Deaf or Hard of Hearing.”

FL3 Round One (2017–2020)

Round One laid the groundwork for this national family support system. In its first three years, the FL3 Center focused on building infrastructure and gathering data to inform the work ahead. Some key accomplishments during this period included:

• Establishing the Center’s Infrastructure: FL3 set up a national technical assistance (TA) team and online presence. A new website and communication plan were developed, and three advisory groups were formed to guide the work – an FL3 Parent and Professional Advisory, a Deaf/Hard-of-Hearing Adult Advisory, and a Language & Literacy Expert group. These groups ensured diverse perspectives.
• Needs Assessment & Data Collection: In collaboration with the National Center for Hearing Assessment and Management (NCHAM), FL3 conducted a comprehensive national needs assessment of families and professionals in EHDI. The assessment was designed to take an in-depth look at the needs of families, Family-Based Organizations, and U.S. state/territory EHDI programs. This data-driven approach provided a strong foundation for targeted improvements.
• Resource Development:  Leveraging experts in language, literacy, and child development, FL3 summarized the latest research and created a user-friendly guide to understanding research for families. For example, they compiled recommended developmental milestones for D/HH infants and toddlers and published “tip sheets” to help parents encourage language and social-emotional growth. Such resources translated academic knowledge into actionable steps parents could use at home.
• Established recommended Guidelines: The FL3 Center developed two sets of Guidelines for establishing and maintaining Family-to-Family Support programs and DHH Mentor/Guide/Role Model programs. The Guidelines are designed as a resource for those interested in the implementation of high quality, sustainable programming for parents who have children who are Deaf/Hard of Hearing (DHH).
• Parent Leadership Training: Even in the early phase, FL3 prioritized empowering parents as leaders. The team developed training programs and workshops to build family advocacy and leadership skills within EHDI. Parents began to receive coaching on how to serve on advisory boards, how to partner with providers as equal stakeholders, and how to support other families. To date, Hands & Voices has 20 recorded Leadership webinars in their Webinars and Trainings electronic library.
• Strengthening Family Support Networks:  FL3 worked hand-in-hand with Hands & Voices chapters and other Family-Based Organizations in many states/territories, expanding the reach of programs like H&V’s Guide by Your Side (GBYS) (which matches trained parent guides with new families). By the end of round one, more families of D/HH children were connected to supportive communities than ever before. FL3’s efforts were enhancing family leadership in EHDI state/territory systems, meaning more parents were taking active roles alongside professionals.
• Elevated D/HH Adult Involvement:  FL3 continued to emphasize that families benefit not only from fellow parents but also from Deaf and Hard-of-Hearing adults. In training and materials, the center promoted D/HH adult involvement as a key component of family support (sometimes called DHH-to-family support). Guidelines were created and an online course was developed to help state/territory EHDI programs with considerations for implementing this additional family support.  By collaborating with Deaf and Hard-of-Hearing leaders, this invaluable perspective of adults who have grown up DHH – often changes families’ perceptions from uncertainty to hope.

By March 2020, these accomplishments demonstrated tangible progress. 97% of state/territory EHDI systems had established partnerships with family-based organizations, with an increase of 75% of families receiving parent-to-parent support. The conclusion of FL3’s initial phase highlighted improved family engagement and support within the EHDI community and an expanded focus on parent leadership development by 77%.

In just three years, the FL3 Center had become a hub of knowledge and networking, seeding family engagement efforts in EHDI programs across the country. This early success set the stage for the next phase of growth.

The FL3 Center: Expansion and Innovation in Family Engagement and Family Support

Unbeknownst to anyone, FL3’s second phase would coincide with an era of unprecedented challenges (most notably a global pandemic) – but it also saw innovation and expansion in family support.

FL3 Round Two (April 2020–March 2024)

Round Two built upon the foundation and took family support, engagement and leadership to new heights, even as the world changed. Some key accomplishments during this period included:

• Enhanced Technical Assistance Delivery: To efficiently support all states and territories, FL3 launched an online TA Request Portal in July 2020. This portal became a one-stop shop for EHDI programs and family organizations to request help, training, or resources from the FL3 team. Over the four-year period, 1,560 TA encounters were provided (averaging ~390 per year), ranging from assisting a state/territory with starting a new family support program, engaging and training new family leaders in the EHDI system, including parents and caregivers from underserved populations who participated in leadership training opportunities. This high volume of TA reflects a strong demand from the field and FL3’s capacity to respond.
• Implemented Evaluation and Quality Improvement: In 2022, FL3 developed a standard evaluation tool to gather feedback after training and educational events.  By March 2024, 914 respondents (including parents and professionals) had submitted evaluations. The data showed overwhelming positive impact – attendees reported gaining knowledge and confidence to apply what they learned. Notably, 95% “strongly agreed” that “I learned new information as a result of attending this session,” and 94% “got ideas to take back to my organization.” Equally important, 90% “strongly agreed” that the session “will assist me with improving my skills to serve as a family leader in EHDI.”  These metrics demonstrate that FL3 training was not just theoretical, but empowered participants (especially parent leaders) with practical skills to improve EHDI in their own communities.
• Created New Tools and Resources: Innovation in family support continued, with FL3 producing a variety of evidence/promising practice-based tools. For example, a Family Support Activities Guide was developed, complete with a training video and tip sheet on how to use the guide effectively. Additionally, a Parent Event Guide was developed. This guide helps Family-based Organizations and EHDI programs plan events and outreach that truly engage families (from support groups, to playdates, to parent panels). Off to a Great Start, a web-based product, focused on resources for optimizing the early decisions of families and child outcomes. There are linkable badges and technical assistance offerings for utilization at the state/territory level. The FL3 Center promoted this information to all EHDI programs, Family Leaders, Family-Based Organizations, and national partners to disseminate and post on their own platforms. FL3 also published Advancing Diversity, Equity, Inclusion, and Accessibility Guidelines for family support programs – ensuring that outreach and services are culturally responsive. Another novel resource was Working Scripts for Inviting Families to Consider Early Intervention, giving providers gentle, scripted ways to encourage hesitant families to try EI services. Collectively, these tools addressed timely needs identified by the community.
• Pivoted During the COVID-19 Pandemic: The COVID pandemic in 2020 posed a huge challenge to EHDI and family support (as in-person appointments and support groups were disrupted). FL3 responded swiftly by creating a Virtual Waiting Room – an online hub of COVID-specific resources for families. They also guided local family organizations on transitioning to virtual formats, so that parents could continue to receive support remotely. By rapidly adjusting to the crisis, FL3 ensured that families remained connected and informed despite lockdowns. This flexibility worked to keep the family support community strong during these challenging times.
• Strengthened Collaborative Leadership: A hallmark of Round Two was partnership. FL3 hosted an Annual Partnership Summit that brought together not only Hands & Voices leadership but also other parent and deaf-led organizations (such as AG Bell, American Society for Deaf Children, Family Voices, Hearing First, the National Cued Speech Association, and the National Center for Deaf-Blind). One tangible outcome was the joint development of a Community Code of Kindness position statement – a set of guiding principles promoting respectful, supportive interactions among professionals, parents, and D/HH adults in the EHDI system. Such unified messaging across organizations fosters a more welcoming and inclusive environment for families receiving services.

By the end of this second funding cycle, the impact of FL3’s work was evident by a 35% increase of stakeholders receiving technical assistance and training. Family engagement was no longer a peripheral topic in EHDI; it was front and center. Outcomes included a 47% increase in parents attending training opportunities, with an 18% increase from underrepresented populations.

All these developments underscore a paradigm shift: families are no longer passive recipients of services; they are active shapers of EHDI systems. Their involvement has led to more culturally competent services, and programs that truly center the child and family. Importantly, this approach benefits professionals too—providers report that working with informed, engaged parents leads to stronger professional/family partnerships and better carryover at home. It’s truly a win-win.

The FL3 Center:

Advancing EHDI Systems of Services Nationwide/A Blueprint for Change

The trajectory of family support and leadership in EHDI continues its upward climb. The FL3 Center has entered Round Three (2024–2029). The overall project goal in this phase is to “increase state/territory capacity for family-to-family support, develop family leadership skills, and engage DHH Leaders as mentors to families across EHDI programs and other system stakeholders.” The FL3 Center utilized the Children with Special Healthcare Needs Blueprint for Change, a national agenda to ensure that every child gets the services he/she needs to play, go to school, and grow up to become a healthy adult, to develop their workplan and center activities so that no matter where a family lives, they can access a strong network for family support.

FL3 Round Three (April 2024–March 2029)

In year one, the FL3 Center has leveraged existing products and resources to maximize efficiency and effectiveness as well as continued its commitment to innovation and the expansion of support to EHDI programs, Family Leaders, and Family-Based Organizations. Some key accomplishments during this period included:

• Enhanced Technical Assistance Data Collection: To begin to measure impact of the TA provided, the FL3 Center updated their database to now collect additional information leading to more details from the results of the TA.
• Broadened the Community of Family Leaders: Every state/territory EHDI program must designate a Family Engagement Liaison (FEL) as the State/Territory EHDI program’s lead for support and engagement activities. These individuals will also coordinate and communicate with the FL3 Center about State/Territory needs. FL3 surveyed all EHDI programs and followed up to collect contact information for each designated FEL. The first in-person meeting of this FEL community took place at the EHDI Conference in March 2025 with 40 state/territory EHDI FELs attending. This cadre of Family Leaders is a direct result of the emphasis on parent leadership development. They are articulate, knowledgeable, confident, and very competent in their role of engaging and leading in the EHDI system. Evaluations from this meeting showed 100% of participants found the content of this session valuable in meeting their program objectives.
• Expanded TA to Provide Timely Support to New EHDI Coordinators and FELs: The FL3 Center created an Onboarding Checklist to guide their first interactions with new EHDI Coordinators and FELs. Within a month of being notified of a new EHDI Coordinator or FEL, the FL3 Center TA team reaches out to schedule an FL3 Center onboarding meeting. 13 one-on-one onboarding sessions happened during this first year period. In addition to these onboarding TA sessions, 496 additional TA encounters occurred during this time.55% were completed with a Family-Based Organization or Family Leader and 18% with EHDI Program Staff as the top two roles requesting TA support.
• Continued Virtual Training and Education Offerings: The FL3 Center hosts several virtual training and education sessions throughout the year, some of these include quarterly Office Hours and Leadership Webinars. 1252 registrations were documented with 671 evaluations completed. The FL3 Center utilizes a standard evaluation survey for all their offerings. From this evaluation, 94.43% strongly agreed/agreed that they learned new information as a result of attending the session and 91.26% strongly agreed/agreed that the information from the session will assist them/their organization in achieving program/organizational objectives.
• Expanded Family Support Tools and Resources: The FL3 Center added a training video and tipsheet as tools to assist with utilizing the Family Support Activities Guide. In addition, an evaluation tool was created for DHH Leader-to-Family Support to assist family-based organizations and EHDI programs with assessing their DHH Leader to Family Support programming. (Similarly, a new tool will be developed in year two to assess family-to-family support programming).
• Strengthen Timely Support to EHDI Coordinators – In response to EHDI programs requirement to develop an Infrastructure Plan by August 2025, The FL3 Center created an EHDI Grantee Phase 1/ Year One Planning Tools Guide for Family-to-Family Support, Family Engagement/Leadership, and DHH-to-Family Support.
• Provided Experienced Leadership in the Development of the new EHDI National Network: The ENN is comprised ofthree National EHDI TA Centers providing coordinated support to State/Territory EHDI Programs to advance EHDI systems of services nationwide so that Deaf and Hard of Hearing newborns, infants, and young children up to age 3 receive appropriate support and timely services to improve language outcomes. The three centers are the Implementation and Change Center (ICC) led by Gallaudet University/Beacon Center, the Provider Education Center (PEC) led by American Academy of Pediatrics, and the Family Leadership in Language in Learning (FL3) led by Hands & Voices. In year one, the EHDI National Network (ENN) as a new entity, required an intentional and thoughtful approach to establishing processes related to ENN administration and partnership building among ENN technical assistance/training (TA/T) centers.

Future Outlook for Family Leadership in EHDI

The FL3 Center, led by Hands & Voices, has been a driving force in real-world impacts of Family Leaders shaping programs and policies. The growth of family leadership within EHDI isn’t just visible in reports and new programs—it’s reflected in real families’ lives and in the fabric of EHDI systems nationwide. Family leaders have increasingly taken on influential roles, ensuring that policies and programs truly meet families’ needs. As we reflect on the FL3 Center’s impact, the growth of Hands & Voices and the FL3 Center can be measured not only in numbers and outputs, but in a cultural shift across the country. Family engagement is now expected in EHDI programs. States/Territories detail in their workplans how they will involve families, and professionals routinely seek parent input and invite parents as advisors to their programs. Crucially, more families of newly identified babies are met with a comprehensive system of support: timely information, connections to other parents and Deaf/HH adults, and opportunities to shape their journey rather than be a bystander. This is the legacy of the past several years of work of Hands & Voices and the FL3 Center.

In conclusion, the creation of the FL3 Center and Hands & Voices’ ability to lead has shown what’s possible when families are empowered in Early Hearing Detection and Intervention systems. We have seen a shift from family engagement being a buzzword to it being a built-in expectation, supported by robust programs and evidence. Family engagement in the EHDI system has not just seen an increase over time as shown in this article through the FL3 Center’s work but is also serving as a model of authentic family engagement in other health and education systems of care within other federally funded projects. The FL3 Center and Hands & Voices have been at the forefront of this change, growing in tandem with the vision that families and professionals are partners in ensuring every DHH child reaches their full potential. As we look to the future, the trajectory is clear: families will continue to lead, side by side with professionals, in evolving EHDI to meet the needs of all children. The value of family engagement is no longer questioned; it is celebrated and continually reinforced by outcomes and stories of success. A guiding principle widely embraced in this community: “Family engagement is not a program or activity, but rather a philosophy that is woven into all aspects of the system.” With that philosophy in place, the EHDI system is poised to reach new levels of excellence, where no family walks alone, and every child who is deaf or hard of hearing is given the earliest possible opportunity to learn, grow, and thrive.  ~

Sources:

Hands & Voices FL3 Center – www.handsandvoices.org and https://handsandvoices.org/fl3/index.html

Revised Conceptual Framework of Parent to Parent Support for Parents of Children who are Deaf or Hard of Hearing: Henderson, Johnson, Moodie https://www.handsandvoices.org/fl3/fl3-docs/Henderson_etal-2016-AJA_famfam-givesupport.pdf

HRSA/MCHB – Strengthening EHDI Systems (Role of FL3 Center and family engagement in EHDI) mchb.hrsa.gov

CDC EHDI Partner Toolkit – Key messages emphasizing families’ role cdc.gov

Research on Family Engagement – Parental involvement as predictor of child outcomes baylor-ir.tdl.org 

CDC data on loss to follow-up pmc.ncbi.nlm.nih.gov

EHDI Family Leadership Award 2025 – Engaged families are central to EHDI success ehdiconference.org