Juno Duenas, parent of a daughter with severe disabilities, has been a staunch leader in family advocacy for more than 30 years. As she retires from her position as executive director of Support for Families of Children with Disabilities, she reflects on her decades of championing the family perspective, and what lies ahead for her.
A novel methodology combining medical complexity (using the Pediatric Medical Complexity Algorithm) and social complexity (using available family social factors known to impact a child’s health and healthcare use) was used to create a new health complexity model at both the population-level and individual-level. Findings from the article demonstrate that a large number of Medicaid/CHIP-insured children could benefit from targeted care coordination and differential resource allocation that aligns with their health complexity.
The California Research Bureau (CRB) investigated the extent to which the state's child-serving departments and agencies incorporate meaningful input from caregivers and youth in policymaking. The CRB research shows that California state government includes some bright spots of meaningful family engagement, but they are sporadic and not common practice throughout all child-serving agencies.
The National Care Coordination Standards for Children and Youth with Special Health Care Needs (CYSHCN) outline the core, system-level components of high-quality care coordination for CYSHCN. These standards are designed to help state officials and other stakeholders develop and strengthen high-quality care coordination for children with the goal of identifying and assessing the need for care coordination, engaging families in the care coordination process, building a strong and supportive care coordination workforce, and developing team-based communication processes to better serve children and families.
Eight years after their launch in 2012, the National Standards for Systems of Care for Children and Youth with Special Health Care Needs are becoming increasingly influential, including being used as a framework in multiple states to develop policies and to write managed care contracts.
The California Community Care Coordination Collaborative (5Cs), brought together agencies and families to identify and address local issues that arise from the painfully fragmented systems of care that California’s children with special health care needs and their families must navigate.
Issues Research, Inc. evaluated the influence of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN) on health care systems. The report synthesizes the views of 50 stakeholders to describe the uptake and influence of the National Standards as well as remaining opportunities to promote their use among key audiences.