Although children with special health care needs account for only 10% of children in California, many of us know of or are affected by a child who is chronically ill. The Family Voices Annual Health Summit and Legislative Day brought together families of chronically ill children for two days of story sharing, education, and rallying at the state Capitol to help raise awareness among lawmakers about this unique population.
On the first day, parents learned about current budgetary and legislative issues affecting their child’s system of care, as well as how to become fierce – yet effective – advocates for their child’s needs. They spoke with each other about their own experiences with insurance companies, pediatricians, school IEPs, and more. Their issues were summed up by one mother who lamented “I’ve been working within this system [of care] for over 20 years, and I’m just now starting to get it … it’s that complicated.” Her story was echoed throughout the day by other parents hoping for an opportunity to share their own story with someone who could help.
After a day of education and preparation, parents went to the Capitol to share their stories with California legislators. Some parents carried envelopes filled with receipts from the myriad of drugs they buy regularly for their child; others toted collages of their children, armed and ready to provide faces to match their stories of struggle. Regardless of their methods, it was clear these parents had one thing in common – they all wanted their voices, and their children’s voices, to be heard by someone with the power to make change happen. This kind of persistent, genuine advocacy is an important component to help legislators understand the impact their everyday decisions have on these children and their families.
Posted by Jordan Handcox