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For more than three decades, Kathryn “Kathi” Smith has cared for children with special health care needs and their families, especially those with neurodevelopmental disabilities. She works as a nurse care manager in the Boone Fetter Clinic at Children’s Hospital Los Angeles (CHLA), helping families of children with autism navigate the complex system of care. She carries out administrative duties in the Spina Bifida Program at CHLA, as well as the Rett Clinic and the Mental Health Program, working to ensure that clinical services meet the needs of children and families.

Kathi has a long-standing interest in access to services for children with special needs, especially those in publicly funded programs. She also spreads the word about the benefits of the medical home model for children with special needs.

Here’s how a CHLA newsletter described Kathi: “With each phone call and each potential treatment, she has one hope: that families ‘will come to understand their child’s condition, see the strengths in their child and learn the things that can help him or her grow.'”

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A new article in the Journal of Pediatric Health Care from the Institute for Patient- and Family-Centered Care and Cincinnati Children's Hospital Medical Center discusses best practices for supporting diverse membership in children's hospital patient and family advisory councils and advancing the involvement of patient and family advisors in hospital-wide diversity, equity, and inclusion projects and initiatives.

This fact sheet from the National Health Law Program is designed to inform families about the steps they can take to appeal decisions about their child’s CCS benefits and highlight key resources available to support the process.