ADVOCACY
Across the United States, local leaders and champions are stepping forward to build pediatric respite, palliative, and hospice care homes to support children with medical complexity and their families. Yet most quickly encounter the same structural barriers: outdated healthcare licensing frameworks and the absence of sustainable reimbursement pathways. Through education and awareness, we work to help policymakers, healthcare leaders, and community champions understand how Pediatric Palliative Care Centers can fit within state healthcare systems — creating the policy foundations that allow communities to open and sustain these homes so families have somewhere to turn when they need support most.
“When policy works, communities can build the care families need.”
Subpage Introductions
National Policy Framework
Our foundational policy paper outlining how states can establish Pediatric Palliative Care Center licensing and sustainable reimbursement pathways — providing a practical roadmap for policymakers and healthcare leaders.
Why Licensing Matters
The lack of a holistic license for pediatric palliative care homes is one of the biggest barriers local leaders and champions face when trying to open a home. Learn how a Pediatric Palliative Care Center license can provide a clear, family-centered structure to help them build what’s missing.
Pathway for Sustainable Care
A clear look at how pediatric palliative care homes can move from philanthropic dependence toward sustainable care through aligned licensing, Medicaid pathways, and healthcare system partnerships.
National Policy Agenda
Our National Policy Agenda addresses the two core barriers that prevent progress: the absence of appropriate licensing pathways and sustainable reimbursement models. When these are solved at the state level, local leaders are empowered to bring pediatric palliative care homes to life.
Policy Wins & What’s Possible
From Medicaid partnerships in Minnesota to Mason’s Law in Iowa, early wins are proving what’s possible. These models show how community champions — with the right policy foundation — can create sustainable homes to support families in need.
A Letter to Policymakers
Our open letter isn’t just from us — it’s backed by more than 60 respected organizations calling for smarter, family-centered systems. Together, we’re amplifying the voices of leaders and families who know there’s a better way.
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Why Respite Care
Parents caring for medically fragile children often go years without a full night’s sleep. This page explores why overnight respite is one of the most urgent supports families need — and why communities are working to make it available.
Working to Remove Barriers and Build Access… To Make Respite and Palliative Care a Reality, Not a Rarity