Co-Creating a Financially Sustainable Future for Caregivers: 2024 Caregiver Coalition Report

Caregivers, both paid and unpaid, play a critical role in the lives of children and youth with special health care needs (CYSHCN) and their families, yet they often are excluded from the creation and implementation of policies that affect them. In 2022, with support from our Foundation, Health Leads established the National Caregiver Coalition, composed of family caregivers, care workers, care receivers, and organizational partners. In 2024, the Caregiver Coalition developed a media campaign to demonstrate what life is like with and without a caregiver. The series was featured at the 2024 Caregiver Summit and disseminated as an advocacy tool to help payers and policy makers better understand the essential role of caregivers and the obstacles they face, with a goal to enhance compensation and benefits for caregivers. In this new report, the Coalition describes its process of creating the media campaign and developing policy recommendations.