Policy Wins & What's Possible
Momentum is Building - and the Vision is Becoming Real
For years, the few existing pediatric palliative care homes in the U.S. — like George Mark Children’s House, Ryan House, Crescent Cove, and A Rosie Place for Children — have carried forward a mission of care without a clear path to long-term financial sustainability. Each developed on its own, often without shared infrastructure, consistent business models, or policy support. What they created was deeply compassionate. But what they needed was systemic alignment.
Today, that’s beginning to change.
From Possibility to Precedent: The Crescent Cove Model
In Minnesota, Crescent Cove took a major step forward. Through persistent policy work and close collaboration with the state’s Medicaid department, they secured the ability to operate under a modified Residential Hospice Facility license. This allows them to bill Medicaid Waivers for both room and board and pediatric palliative care services — at nearly $2,000 per day for eligible children.
Instead of relying entirely on philanthropy, this reimbursement model enables Crescent Cove to cover much of its daily operations while preserving its core mission: providing short-term overnight respite and palliative care in a home-like setting. For children receiving hospice services, Crescent Cove partners with an external hospice provider for that component of care — while still billing for the supportive environment and core services.
It’s not a perfect system — the home still operates under two separate licenses — but it’s one of the most advanced, sustainable models currently in practice. And more importantly, it created a starting point for others to build from.
A Cleaner Model Emerges: Mason’s Law in Iowa
On May 26, 2025, Iowa signed Mason’s Law into effect, becoming the first state to establish a dedicated Pediatric Palliative Care Center (PPCC) license. Further advancing the Minnesota precedent, this license combines overnight respite, palliative care, and hospice accommodations under one holistic framework — allowing communities to serve children across their full journey without sacrificing flexibility or mission.
The Iowa model simplifies the structure: instead of managing two or more licenses, homes will operate under a single PPCC license. And crucially, this license is recognized across all state funding sources — from Medicaid Waivers and State Plan Amendments to Title V and other state-based resources. While there still are next steps including establishing appropriate reimbursement rates with Iowa Medicaid, and detailing the specific regulation scopes with DIAL, the policy foundation is now in place.
What This Means for Other States
Mason’s Law represents a major leap forward. It shows that when local champions, state policymakers, and national partners align, it’s possible to move from hope to infrastructure.
It also provides a replicable path for other states — including those already exploring next steps like Colorado, Texas, and others — to follow. With technical assistance, advocacy education, and legislative support, the same outcomes are within reach elsewhere.
And for existing homes like Ryan House or George Mark Children’s House, the vision is now clearer than ever: with the right license and reimbursement model in place, these homes could one day reduce — or even eliminate — their reliance on philanthropy to cover day-to-day operations.
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The Road Ahead
There is no “perfect” system yet. But we’re no longer working from theory. A sustainable, scalable model exists — and it’s already being implemented.
At the National Center for Pediatric Palliative Care Homes, we are committed to helping every community understand what’s possible, build the relationships they need, and create the local momentum to move policy forward.
Because when systems align, communities can finally build what families need.