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As executive director of the Eastern Los Angeles Family Resource Center, Yvette Baptiste helps local families navigate the maze of services for their children with special health care needs. She can relate to their struggles as she helps her three grown children navigate adulthood with their own health care challenges, which are significant. With a skeleton staff, Baptiste’s center helps parents learn about their child’s medical and developmental conditions, trains families to be effective advocates for their children, and links them to health professionals and educational services.

Baptiste wants to help parents avoid some of the frustrations of navigating the systems she faced with her own children, all adopted with special health care needs. She recalls one insurance company meeting in which officials tried to deny her then 2-year-old son, who had a genetic disorder known as Klippel-Feil syndrome, the services he needed. So she pulled off his shirt in the meeting to show them her son’s shortened neck, which is characteristic of the syndrome.

“I had to strip my son naked to get them to pay attention to what I was saying. I don’t think a mother should have to do that,” she said. “Parents have concerns about their children but may not be able to speak the language or convincingly get their needs across. That’s what I try to do every day –to give parents the strength and the self-confidence to be a part of the help team for their child.”

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Findings from a survey of California-based caregivers that asked them about their experiences receiving peer support for caring for children and youth with special health care needs.

This virtual cafe provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The café was the first of a six-part series led by the Center for Innovation in Social Work and Health at the Boston University School of Social Work.