The Partnership Continuum
Family-based Orgs and EHDI Systems
By Sara Kennedy, H&V Headquarters
In today’s EHDI systems, health departments and related organizations are challenged beyond getting family leaders “involved” toward authentic family/professional partnerships as we make the systems work for families to move through the EHDI milestones of 1-3-6. With budget cuts, leadership turnover, uncertainty of future funding, and higher caseloads, our current systems are strained–for both agency partners and family-based organizations.
Despite these pressures, our mission remains the same: to increase state capacity for family-to-family support, help programs meet objectives related to family leadership skills, expand engagement with underserved families, and improve partnerships with organizations engaging in family-to-family support and DHH adult mentorship across and within EHDI systems (as outlined in the HRSA Cooperative Agreement with the FL3 Center).
Hands & Voices’ broader mission remains: supporting families throughout the journey—from early access to timely hearing screening through identification, early intervention, school years, and into adult life. When resources are stretched, partnerships among professional and family partners can extend capacity, reduce duplication, and increase the positive impact on families served.
A Little History on a “New” Idea
A theory called co-production of services emerged in the 1960s, recognizing that, unlike a product, a service should be developed with partnership and intention from the beginning. Instead of gathering input only after a service is delivered, co-production calls for integrated feedback throughout the entire service system. In EHDI, families have a lived experience, but family leaders need support to understand the needs of all families and agency issues in screening, identification, and early intervention to provide valuable feedback from the “end-users” perspective. True co-design also requires meeting the needs of professionals: EHDI Coordinators, database managers, pediatric audiologists, early interventionists, DHH, and family organization partners.
While this idea is more than 50 years old, co-production remains rare. Pulling family voices into the earliest stages of system design (or redesign) requires forethought – and often, yes, a little luck in having the right people in the right seats at the right time.
Why the Time is Right for a Glow-Up
Today’s challenges require collaboration that is intentional, not accidental. Hands & Voices has developed structures to support this–onboarding for family and EHDI leaders, the L2L Program (a yearlong mentorship opportunity for leaders), and more leadership development–to tip the balance toward higher levels of partnership as called for in the Joint Committee for Infant Hearing Goal 8. Parents need training and a network of other leaders to gain knowledge about the EHDI system. The JCIH self-assessment plays an important part in determining areas for improvement when holistically assessed by a full complement of an EHDI system advisory committee.
During discussions with our FL3 Advisory Committee, we realized the Partnership Continuum Tool, originally developed in 2017, needed strengthening. With shared language, organizations can talk about levels of partnership and identify realistic next steps, even unilaterally if needed. The updated tool expands the five levels of partnership described in 2017: coexistence, networking, cooperation, collaboration, partnership, and adds a sixth: co-production. The new tool also allows for more incremental progress. The revised version asks teams to reflect on what level of partnership might exist currently in five concrete areas:
- Awareness and Relationships
- Communication
- Data and Referrals
- Decision-making and Representation
- Funding/Sustainability
Teams review each area, reflect on their current level, and consider whether they want to deepen a partnership in the coming year. More advanced partnerships might reflect on the tool together and use it to guide a meaningful series of discussions. What helps us work together? Where are we getting stuck? What small step could move us forward?
Why Partnership Matters
Stronger partnerships with family-based organizations tie directly to outcomes for families. When communication improves, families experience less frustration navigating 1-3-6 and beyond.
Consider a few real-world examples.
Texting is a more effective way to reach postpartum families than mailing, yet many systems rely only on mailed letters, a slow process that leaves gaps in follow up.
Families with a child who has cCMV need rapid follow-up to meet the 21-day treatment window for antivirals.
An audiology practice with known limitations in pediatric diagnostics needs mentorship and partnership, not silence, so families are not left vulnerable.
Depending on where a family lives (i.e. rural, low-resourced communities), connected services are even more essential to overcoming service gaps.
Stronger decision-making structures elevate family voice, improving equity and outcomes. Shared data reduces gaps and supports better navigation across EHDI milestones. Measuring partnership isn’t the end goal – it’s the beginning of strengthening alignment and shared goals. At a time when much feels beyond our control, how we partner is one thing we can influence. Improving and expanding partnerships don’t require new funding, new staff, or sweeping reform.
The Takeaway
Try the tool with your own team, first. Who are your partners? Who should also be on that list? Choose one category to improve, think of some small steps to get there, and revisit it monthly. As the Early Childhood Technical Assistance Center (ECTA) notes, “With strong cross-agency partnerships, organizations are more likely to weather funding uncertainties and turnovers to maintain service continuity.”
Finally, The National Institute of Child Healthcare Quality (NICHQ) notes that, “Patients and their families are essential allies and key stakeholders in efforts to improve care. In fact, no one has more invested …in maintaining what is good about the delivery of care and improving the areas that need improvement. While this is often acknowledged, providers still find themselves doing things to and for the patient, rather than with them.”
No one persists at decision-making tables longer than parent leaders whose children have been affected by public policies. The Partnership Continuum Tool is one way to harness that drive in service of systems that better serve families. ~
References:
Hands & Voices Partnership Continuum Tool: https://handsandvoices.org/fl3/fl3-docs/PartnershipContinuumHV.pdf
Joint Committee on Infant Hearing (JCIH). (2019). Year 2019 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs.
Early Childhood Technical Assistance Center (ECTA): System Framework for Building High-Quality EI/ECSE Systems.
National Institute of Child Healthcare Quality (NICHQ). Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care.
H&V Communicator – Winter 2026