The perspective and expertise of parents and caregivers are invaluable in efforts to improve the health care system for children with special health care needs. But how can service and policymaking organizations involve family members in Family Advisory Committees and maintain their interest and participation? A veteran parent offers her thoughts and tips.
Whether it’s facing the shock of a first diagnosis or responding to the many challenges along the way, parents of children with special health care needs often find that their most highly valued source of support is an experienced and knowledgeable parent who has navigated the same path. But where to find such a parent? Family-to-Family Health Information Centers may provide the answer.
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.
Families of CSHCN are the experts on their children’s health care and on how systems and services could function more effectively to meet their needs. However, many family members lack the skills, confidence, and support to pursue advocacy and leadership roles in system change. That’s beginning to change in California.
May is Mental Health Awareness Month, a time to note that many children with special health care needs also require mental health care services. The California Legislature has proposed several bills that address children’s mental health. There are two current bills worth noting.