Experience-based knowledge

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 Parents Speak Out is a story about a Vermont family and their journey to become competent care coordinators for their child.

You can hear an audio interview with a mother in Oklahoma who describes moving from being the primary care coordinator for her son to accessing care coordination services that relieved her of many responsibilities.

            Hear interview from a mother in Oklahoma (PC) 
           Hear interview from a mother in Oklahoma (Mac)    

• A video story describes the Kaiyah family in Hawaii whose mother accepted the lead care coordinator role. At this site, you can also link to a Guide that highlights key points in the video and additional resources.
  


• 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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