Caregivers of children with special health care needs know a particular frustration. They are often invited to share their difficult and deeply personal stories, yet are not invited to take action. They navigate complex health systems, yet are not given a real platform to shape them. “Caregivers are not only witnesses to public health systems, but they are daily navigators, problem-solvers, and negotiators within them,” says Tamira Daniely, Senior Policy Associate of Health at the Alliance’s California ally, Children Now. “Too often, these systems don’t see them as experts.”
Advocates at Children Now believe families should have a say in the policies that affect their kids, not as token representatives, but as experts whose lived knowledge is essential to designing systems that actually work. That belief drove the creation of the Caregiver Advocacy Circle, an organizing hub created by and for caregivers of children with special health care needs, designed to provide resources, advocacy support, and policy mentoring to caregivers and to fill a critical gap in the advocacy ecosystem.
The Caregiver Advocacy Circle, which operated from July 2023 to October 2025, grew out of conversations with experienced caregiver advocates who were already doing state-level work in California, such as sitting on advisory committees, giving public comment, and engaging in legislative advocacy, but who lacked a network and ongoing policy support. They wanted two things: connection with peers doing similar work, and access to policy mentoring that could make them more effective. Children Now partnered with Family Voices of California, whose Project Leadership program trains parents of children with special health care needs in the basics of advocacy, to design the Circle as the critical next step in a caregiver leadership pipeline.
Children Now also learned from others doing similar work across the country. Through the Alliance and Zero to Three’s community of practice on family engagement, Daniely connected with peer organizations that partner with parents and families, exchanging evidence-based practices and lessons learned. That ongoing idea-sharing and monthly conversations over nearly a year directly informed and strengthened the approach to supporting caregiver advocates.
Over nearly three years, Circle members, all compensated for their time and expertise, generated policy recommendations on closed-loop referral practices, emergency climate disaster supports for medically complex children, home nursing and mental health care access, and transitions from pediatric to adult care. One of its most significant contributions involved the state’s Enhanced Care Management (ECM) program. Caregivers in the Circle reported that on the ground, ECM was not as effective in care navigation and coordination as it should be. Children Now worked with caregivers to conduct qualitative research to uncover firsthand what families were experiencing. The findings revealed a structural gap in which the Department of Health Care Services had no mechanism to gather feedback from families on how ECM was actually being implemented.
A primary recommendation was that DHCS create a dedicated space to hear directly from caregivers and providers. DHCS has acknowledged stakeholder engagement as a priority and committed to its involvement — a meaningful step toward making it a reality. “That was a huge win for caregivers,” Daniely says. “It proved to DHCS the value of caregiver leadership and how important it is to make sure those voices are able to inform more effective policy.”
The experiences of members in the Circle became the foundation for a new resource, the Playbook for Engaging, Supporting, and Sustaining Caregiver Advocates. Developed by Children Now and caregivers in the Circle, it is designed for advocacy organizations, state agencies, and health plans that want to move beyond performative engagement and build genuine partnerships with caregivers to help them shape policy. For advocacy organizations in particular, it offers a concrete framework for doing the kind of community-centered work that is easy to commit to in principle and much harder to execute well in practice.
The Playbook is organized around three phases. The first covers recruitment and initial engagement. It asks organizations to design spaces for shared power from the outset, defining roles that enable caregivers to actually shape decisions, not just react to them. It emphasizes recruiting through trusted community partners, being transparent about what participation entails, and personalizing onboarding so caregivers feel welcomed as genuine partners. “Reach out to them, have one-on-one conversations, welcome them into the space, capture their goals and interests, and keep that in mind throughout. That’s what makes people feel like true partners whose expertise is valued, because it is,” Daniely says.
The second phase addresses how to support caregivers once they are at the table. The Playbook emphasizes co-designing agendas and priorities, maintaining relationships between formal meetings, investing in ongoing training and mentorship, and honoring the emotional labor of sharing lived experience. Flexibility is also essential as caregivers with medically complex children face time constraints and emotional demands that standard engagement models rarely account for. Perhaps most importantly, caregivers should be compensated for their time, stories, and expertise, with related participation costs such as child care and transportation factored in as well.
The third phase focuses on sustaining and retaining caregivers over time and building feedback loops for accountability. The Playbook also calls on organizations to celebrate wins publicly and attribute credit visibly to the caregivers who drove them, and to consider how caregiver leadership can be embedded into organizational culture for the long term.
Children Now is careful to position caregiver engagement not as one-sided or extractive, but as a genuine partnership between people with different kinds of knowledge. “Families and caregivers are the experts on their own lives — that knowledge is irreplaceable and should drive what we’re working toward,” says Stacy Lee, Chief Learning Officer and Senior Managing Director of Early Childhood for Children Now. “Good partnership means we don’t leave the responsibility of fixing systems to those most harmed by them. We bring policy expertise, research, and accountability to the systems and leaders responsible for change. When lived expertise and policy expertise meet as equal partners the solutions are stronger and more effective.” The staff at Children Now see that dialogue and combining on-the-ground insight with policy expertise as the place where the most effective advocacy happens. In practice, that means it serves as an intermediary and partner, bringing its strengths as a policy, research, and advocacy organization directly to caregiver advocates who have powerful ideas and lived experience, but are navigating systems that can be difficult to change. That can look like developing fact sheets, testimonies, and op-eds, as well as more nimble guidance on data analysis, influence tactics, and strategic policy decision-making. “We have the bird’s-eye view, and caregivers bring the perspective on the ground,” adds Daniely. “That’s a winning relationship.”
Although the Circle is no longer in operation, Children Now continues to work with its longtime partners at Family Voices of California to ensure members maintain peer connections and advocacy support on the issues they care about most. One priority that emerged directly from the Circle is already in motion. Children Now is working with a coalition of advocates and caregivers from the Circle to advance AB 2486 (Addis), a bill that would preserve and strengthen the California Children’s Services (CCS) Advisory Group — the only formal venue through which health care providers, families, and advocates can advise DHCS on improvements to the California Children’s Services (CCS) program, which serves nearly 200,000 children and youth with complex medical needs across California. Without action, this critical space, which has elevated caregiver voice for nearly a decade, could sunset at the end of the year. The bill would also strengthen family voice by expanding the caregiver and youth seats on the Advisory Group. Through this effort, Children Now continues to fight to ensure families have a seat at the table in the design and implementation of policies and programs that affect kids. The legislation has earned bipartisan support and is now pending in the state Senate.
The Playbook is the Circle’s most transferrable legacy, a resource any organization can pick up to understand how to effectively make caregiver engagement a genuine pillar of their advocacy work. For Children Now, it is a real measure of success. The Playbook exists to help more organizations hold themselves to that same standard, and to give caregivers the tools, support, and respect they need to make a difference.