You can learn the care coordination stories of three families who each advocated for a type of care coordination that would best suit them. Learning how they found successful solutions can provide you with ideas of the advocacy steps that might work for you.
- The Jones family: The Jones Family Parents Speak Out is a story about a Vermont family and their journey to become competent care coordinators for their child.
Hear interview from a mother in Oklahoma (PC)
Hear interview from a mother in Oklahoma (Mac)
The Kaiyah family: On the webpage of Medical Home Family Stories Interactive Training provided by the National Center for Medical Home Implementation, you can find brief interactive videos of several families. We highly recommend the story of the Kaiyah family in Hawaii whose mother accepted the lead care coordinator role. Highlights key points in the video and additional resources are also available at this site in pdf format.
- The Saultz family: Hear John Saultz, professor and Chairman of the Oregon Health and Sciences University, describe a family-physician partnership in coordinating primary and specialty care for a child with a complex disability.
Hear John Saultz (PC)
Hear John Saultz (Mac)
Parents also share their experiences on the Beach Center Community of Practice.
Family Strategies and Resources provides highlights of parents’ perspectives and action tips.
Action Steps from Family Leaders, also available in
Chinese, provides advocacy guidance from family leaders in
Parent to Parent programs and
Family to Family Health Information Centers.
A key to advocating for care coordination is to use a care notebook/plan when planning care with professionals. A team of experts, in partnership with the National Center for Medical Home Initiatives, integrated 20 complete care notebooks into 6 major sections each of which is available as downloadable templates.
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Experience-based knowledge
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