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ADVOCACY

At the National Center for Pediatric Palliative Care Homes, our advocacy begins with education. We shine a light on the barriers families face and help leaders understand how policy and regulation can unlock access to trusted community-based care.
 

Most states lack a clear license for pediatric respite and palliative care homes. Instead, communities must navigate outdated or mismatched rules — making it nearly impossible to create sustainable programs. We help change that.
 

Through research, technical guidance, and strong partnerships, we educate policymakers, health agencies, and system leaders on the solutions already working in places like Minnesota and Iowa. Our focus is on advancing licensing, reimbursement, and regulatory models that better support medically fragile children and their families.
 

We are not a lobbying organization — but we are committed to raising awareness and shaping conversations that lead to smarter, more compassionate care systems.

Subpage Introductions 
 

  • 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.
     

  • 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 that have joined in calling for smarter, family-centered systems. Together, we’re amplifying the voices of leaders and families who know there’s a better way.

Working to Remove Barriers and Build Access… To Make Respite and Palliative Care a Reality, Not a Rarity

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