Included and Funded—But Who Holds the Influence?
Rethinking how lived experience is positioned in child-, family-, and transition-age youth–serving systems
Across the country—and in many parts of the world—communities have worked to better include family and youth voice in public child-, family-, and transition-age youth–serving systems.
In many ways, this is progress. For a long time, those voices were missing entirely.
This work is especially complex within children’s services—where young people are not navigating systems alone. They come with families, or need permanent ones, and the decisions made carry long-term consequences.
In some places, these efforts have gone further—moving beyond participation and attempting to build real structure. Not just inviting lived experience into conversations, but creating ways for it to inform policy, shape practice, and influence services over time.
For a moment, it can feel like a different path is possible.
But over time, something begins to shift.
As roles become more formal, funding becomes part of the conversation. Positions are created. Responsibilities are defined. In some cases, services become billable.
And while this can bring stability, it also changes the structure.
Efforts that began as independent, family- and youth-led voices are often brought into provider organizations or system frameworks. What started as a space for influence gradually becomes part of service delivery.
And that shift shows up in real ways.
A family partner or peer support specialist may sit beside a social worker, both committed to supporting the same family—but they are not positioned the same.
One is paid within the structure they are expected to influence.
The other holds decision-making authority shaped by policy, training, and accountability to that same structure.
In meetings, this can show up in small but meaningful ways—what gets documented, what gets prioritized, and ultimately, what decisions move forward.
The peer partner may see something differently—but pushing too hard can carry risk.
The social worker genuinely wants to help—but operates within expectations that guide what decisions are considered appropriate.
In many cases, the peer support role itself is supervised within that same structure—further narrowing the space to challenge or shift decisions.
No one is wrong.
But the space for true partnership narrows.
Lived experience is still present.
But its ability to operate independently—and to influence beyond the boundaries of the role it is funded to perform—becomes harder to sustain.
Lived experience needs to be funded to be sustained.
But when funding is tied only to service delivery, it can limit the ability of family and youth leaders to operate independently and influence at a broader level.
This isn’t about whether people care. Many do—and they’ve worked hard to open doors that didn’t exist before.
The challenge isn’t commitment.
It’s how the work is structured once those doors are open.
And as lived experience moves into leadership and policy roles, another challenge begins to surface.
How do we keep that perspective current?
A policymaker with lived experience may no longer be connected to the day-to-day realities of families navigating services today. Their insight remains valuable—but the landscape continues to change.
So the question is not only how to elevate lived experience.
It is how to keep it grounded in the present.
How do we ensure that those shaping decisions remain connected to what is happening on the ground—without expecting them to remain in the very circumstances they worked to move beyond?
This work does not fit easily into traditional structures.
It asks something different.
It asks for approaches that are flexible, relational, and responsive to real life—not just what has been defined in policy or contract. It asks systems to move beyond business as usual.
Similar to early wraparound approaches, this work requires a level of authenticity and flexibility that can be difficult to sustain once it is formalized and scaled.
At its core, early wraparound was grounded in an unconditional commitment to families—a belief that no matter how complex the situation, support would not be withdrawn.
As these approaches became formalized and billable, sustaining that level of commitment became more complex within structures designed around defined roles, services, and limits.
Unconditional commitment was not a small detail.
It was the foundation.
And it is often one of the first things that becomes difficult to sustain.
For those responsible for shaping policy, funding decisions, and system design, this creates a different kind of responsibility.
It’s not only about whether lived experience is included.
It’s about how it is positioned—and whether the structures you create allow it to remain independent, current, and able to influence decisions over time.
That requires asking different questions.
Not just:
Do we have family or youth voice at the table?
But:
Is that voice able to challenge decisions without risk to its role?
Is it connected to what families are experiencing today—not just what was true years ago?
And are we funding it in a way that allows it to lead… not just support?
These are not easy questions.
But without them, it becomes difficult to move beyond participation—and toward meaningful influence.
Many systems today are working hard to include lived experience.
But inclusion alone is not the goal.
The harder question is this:
Can lived experience be funded, structured, and scaled… without losing the independence, relevance, and authenticity that made it powerful in the first place?
Because lived experience was never meant to sit alongside the system.
It was meant to help shape it.
And that only happens when the structures around it—policy, funding, and design—make that possible.
Try This
If you are in a position to influence programs, services, or policy, take a moment to reflect:
- Where does lived experience show up in your work today?
- Is it positioned to influence decisions—or primarily to support existing structures?
- What would need to shift for that voice to lead, not just participate?
Research and Practice
Research and practice over the past two decades have consistently shown that family- and youth-driven approaches improve outcomes for children and young people. Foundational work by Karl Dennis and John VanDenBerg helped shape early wraparound approaches grounded in flexibility, shared decision-making, and an unconditional commitment to families.
National efforts led by the National Federation of Families for Children’s Mental Health and supported by the Substance Abuse and Mental Health Services Administration (SAMHSA) reinforced the importance of embedding family and youth voice at every level—from direct service to system design.
More recent research, including work led by Eric Bruns and the National Wraparound Initiative, has continued to highlight both the effectiveness of these approaches and the challenges of sustaining them within traditional funding and service structures.
The tension is not new.
But it remains unresolved.
Donna Ewing Marto
LUV Solutions
Thoughts for the Journey — Data with Soul