AN AFFILIATE OF THE LIFE SPAN INSTITUTE & THE DEPT. OF SPECIAL EDUCATION

Experience-based knowledge

Family holding childrenYou 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.

    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.

           Image of Windows Media Player icon. Hear interview from a mother in Oklahoma (PC) 
           Quicktime iconHear 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.

    Image of Windows Media Player icon.  Hear John Saultz (PC)
    Quicktime icon  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.

 

[Care Coordination Knowledge Bank    Experienced-based Knowledge   Research    Policy]