Among all of the bills that were voted into law this past Legislative session in Minnesota was a small but impactful piece that helps families of children with shortened life expectancies. With its passing, Minnesota became the first state that allows facilities to receive funds from the state when a child stays for end-of-life care at a residential hospice home. The bill passed with bipartisan support, was signed into law by Gov. Tim Walz and goes into effect July 1, 2023.
Funding provided by this bill will permit Crescent Cove to bill the state for a portion of costs related to the care of children who receive end-of-life care. Currently, pediatric hospice care is not covered by private insurance, and until now, no reimbursement model covers end-of-life services for families.
“Minnesota’s legislation makes it possible for parents to know that, in addition to home or hospital, there is another option for their child’s sacred care at the end of life,” said Katie Lindenfelser, founder and executive director of Crescent Cove. “No out-of-pocket costs have ever been incurred by parents whose children die at Crescent Cove. Now, in combination with our generous philanthropic community, state funding will be monumentally supportive of our ability to sustain this model of caring for our most vulnerable, medically fragile children.”
Brian Osberg, Crescent Cove board member, and former Minnesota Medicaid director, described the law as breakthrough legislation. “Minnesota’s law paves the way for national reform,” he said.
“We are so grateful to our legislators and families who for the past two years have helped to champion this bill,” said Katie. “In our five years of operation, we have received significant philanthropic support from our donors and community in order to provide respite, palliative, and end-of-life services. This legislation will help to take the pressure off our families and philanthropy so that donor dollars can be used to expand and serve more children. We thank Gov. Walz and Lt. Gov. Flanagan, Rep. Liz Reyer and Sen. John Hoffman, who championed the gift of this legislation.”
Carrie Edberg, a single mom of seven boys whose son died at Crescent Cove in 2022, testified during committee hearings in support of the proposed bill. She and Brian Osberg were interviewed on Cathy Wurzer's program, "Minnesota Now," which aired earlier this week, to inform listeners about the bill and its importance to families of children with shortened life expectancies.
"Losing a child is something I would not want any parent to go through," says Carrie, "When my son Leo was declining, I talked to my other sons about if Leo should pass at home. They said they did not want to remember that he died every time they passed a room in our house, and that's why I knew Crescent Cove was the place for us. This is a home that needs to exist for other families because unfortunately, some children do pass away."
Listen to the podcast about this first-in-nation law. Thank you to all those who have advocated, testified, and supported us in this effort over the past two years!