As the newsletter of the California Advocacy Network for Children with Special Health Care Needs marks its fifth year of publication, respondents to our biennial readership survey continued to express approval of the newsletter’s content, format, length, and frequency. In a welcome indication of the broad national interest in improving systems of care for children with special health care needs, 45 percent of the respondents came from outside California, up from 24 percent in 2016.
Improvements in care delivery for children with medical complexity are becoming a major focus of national and local health care and policy initiatives. A number of new models have been developed, with promising examples of enhanced care coordination and family engagement.
When Magaly was 11, her mother, Olga, found suicide plans on her phone. Six years later, they continue to navigate the challenges of Magaly’s diagnosis of depression and psychosis. Their journey touches upon the importance of early identification of mental health issues, access to care, and the struggles for support. Children with chronic and complex physical conditions often have mental and emotional issues that go unrecognized and untreated.
Engaging with families is vital to transforming the health care system and positively impacting the life course of vulnerable populations. Families have extensive experience in partnering with professionals to improve systems of care, are organized and connected across the country, and stand ready to assist at every level of next efforts for improvement. Learn how to meaningfully involve families at every level of health care systems and engage them as critical partners in designing policies that will improve care for all children.