The Problem
Families of children with complex medical needs often cannot access enough—if any—Private Duty Nurses. Without adequate nursing support, many parents must provide intensive medical care themselves. However, families who step in to deliver these critical services are often unable to receive reimbursement, forcing them to choose between staying home to keep their child safe and out of the hospital or working to support their family. This gap places children’s health at risk and creates severe financial and emotional strain for families.
Action
In FFY23, the Maine Developmental Disabilities Council (MDDC) supported families in successfully advancing statutory language directing the state to create a process allowing parents to be reimbursed for providing this essential care. When families continued to face barriers accessing reimbursement, MDDC intensified advocacy efforts in FFY25. The Council issued a statewide call to action, worked with a State Senator to amend LD 1540 into a legislative resolve to study the issue, and convened a multi-stakeholder workgroup—including parents, clinicians, and service providers—to identify barriers and develop practical policy solutions. If implemented, reimbursement reforms could support more than 800 families across Maine.
Results
Although statutory solutions have not yet been finalized, the Council has advanced the conversation from individual challenges to a clear systems issue. Stakeholders mapped the care process and documented critical service gaps that can lead to life-threatening outcomes for medically complex children. Families are now actively shaping solutions. As one parent shared, “I feel seen for the first time… I have hope.”
What Made the Council’s Role Unique
The Council’s trusted, nonpartisan leadership enables it to convene families, clinicians, providers, and policymakers—working both inside and outside government to drive systemic solutions that protect children and support families.