Families Belong at the Center of Medi-Cal’s Transformation

California is once again reimagining Medi-Cal. The Department of Health Care Services (DHCS) recently released its concept paper for the next federal waiver cycle (2027–2031), outlining the state’s vision for “centering the member experience.”

As a parent raising two former foster children with complex medical needs who depend on Medi-Cal—and as someone who has spent years navigating this system both personally and professionally—I know firsthand what “member experience” actually means. For families like mine, it’s the difference between timely care and dangerous delays, between health stability and ED visits and medical crises.

That’s why I believe California must move beyond consultation and commit to shared governance with families. Without real time feedback loops and meaningful roles, for parents and caregivers at the decision-making table, the next transformation risks missing the very voices it claims to center.

The Missed Promise of “Family Partnership”

The concept paper talks about “centering members,” but families of children with special health, and complex medical, care needs remain on the margins. Children aren’t simply “little adults.” Their care requires tailored solutions that account for developmental needs, family context, and long-term outcomes.

If Medi-Cal wants to deliver on its promise, it must embed families not as advisors after the fact but as co-creators from the start.

What Shared Governance Looks Like

The paper mentions a Medi-Cal Member Advisory Committee—but provides no details on who sits at the table or how their voices shape policy. Families deserve better.

• Advisory committees must have memeber majority representation and actual decision-making power.

• Caregivers of children with disabilities must have parity of voice across all committees.

• Families should help design monitoring metrics, co-develop agendas, and see transparent reporting on how input changes policy.

• Beyond committees, DHCS should establish collaboration spaces where caregivers and staff problem-solve side by side.

Families as Lived Experts

Families are not stakeholders on the outside—we are the lived experts who know where the system fails and where it works from the inside. Yet the process still treats us as informants rather than partners.

What we need instead:

• Ongoing roles in program design, not just occasional listening sessions.

• Peer navigators and support specialists embedded in implementation and monitoring teams.

• Training and compensation so families can contribute sustainably.

• Recognition that our daily experience is data—vital for system improvement.

Gaps That Matter to Families

Metrics that Miss the Point - Success for DHCS today is measured by cost savings and provider counts. Those don’t tell us whether our kids actually got the care they need.

Families want measures that track:

• Time from referral to appointment or treatment.

• Real-time satisfaction and service quality.

• Whether care coordination reduces our administrative burden.

• Cultural and language accessibility informed by consumers not service providers.

• Child health and educational outcomes.

No Direct Accountability to Families

Grievance processes are too slow and complex. Families need:

• Clear, centralized grievance navigation that doesn’t require a lawyer - in lieu of the current labyrinth that includes managed care plans, counties, and the DHCS ombsbuds office.

• Real-time member feedback loops with documentation of how DHCS uses member information to course correct.

• Family ombuds programs with teeth staffed by trusted messengers.

• Public reporting of plan performance from the family perspective.

Narrow View of “Coordination”

Families like mine don’t just coordinate doctors and hospital visits —we’re bridging schools, therapies, social services, county mental health programs, employment, and disability programs every week.

Medi-Cal must:

• Recognize families as the ultimate care coordinators.

• Design supports that lighten our load, not add to it.

• Partner with families to authentically integrate Medi-Cal with the other systems and siloes our children depend on.

Budget Pressures Make Family Voices Essential

California acknowledges looming budget constraints that could affect millions of Medi-Cal members. In times of scarcity, prioritization must be done with families, not to us. Otherwise, cuts will land hardest on those already carrying the heaviest burdens.

What Needs to Change - Starting Now (2025):

• Establish family-majority advisory committees for each Medi-Cal population.

• Create peer navigator and parent support roles.

• Co-develop family-centered metrics.

• Provide ongoing opportunities for family input beyond CAHPS and grievances.

In the Waiver (2027–2031)

• Make shared governance a requirement for federal funding.

• Mandate regular, co-designed satisfaction reporting tied to accountability.

• Require family impact assessments before major policy changes.

• Fund family participation with stipends and accessibility supports.

Ongoing Partnership

• Monthly family forums in every region.

• Regular collaborative leadership meetings with DHCS.

• Co-created member-facing materials for all children’s programs.

• Annual family-led evaluations of services.

• Family presence on all committees that affect children and youth.

• Transparent feedback loops showing how input changed policy.

Closing Thought

California has made strides through CalAIM, but the next transformation won’t succeed without families as true partners. This isn’t just about listening sessions or advisory checkboxes—it’s about shared power.

Our children’s health and futures depend on a Medi-Cal system that recognizes caregiver expertise as central to success. Families are ready to do this work alongside DHCS. The question is whether California will make the structural changes needed to let us in to build a system that can truly serve and save our children.