Care Coordination
Care Coordination
Care Coordination webpage header

CNF believes that care coordination and integration are essential for families to be able to access the care they need for their child with a neurologic condition.  

So, what is care coordination?

The American Academy of Pediatrics policy statement defines care coordination as:  

“A patient and family centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families. Care coordination addresses interrelated medical, social, developmental, behavioral, educational, and financial needs to achieve optimal health and wellness outcomes.”*

The Child Neurology Foundation conducted a needs assessment and found that ninety-one percent of families surveyed in our community were their child’s care team leader. However, this is not always manageable, especially in situations where complex care is needed.  In order to achieve care integration, families work with a team to develop a care plan that meets their medical needs as well as their needs in the community.  

*American Academy of Pediatrics Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee. Patients-and family-centered care coordination: a framework for integrating care for children and youth across multiple systems. Pediatrics. 2014; 133(5): e1451-e1460)  

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Who is involved in care coordination?

Many different types of people are involved in a child’s care coordination plan. The patients and families are critical components of care coordination and integration.  Other stakeholders can include, but are not limited to, pediatricians and other physicians, pediatric medical subspecialists and pediatric surgical specialists, case managers, community health workers, schools, state agencies, and more. Anyone who can help your child with their health and well-being can be a part of the care plan. 

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What is a care plan?

A care plan… 

  • Is developed by a team of people who regularly help meet the child’s and family’s needs 
  • Have goals associated with the health and well-being of the child 
  • Is patient/family centered 
  • Uses assessments to guide decision making 
  • Is re-visited frequently and updated to ensure that all needs are being met 
  • Involves not just medical professionals but community supports as well 
  • Is used to track progress and facilitate communication across teams 
  • Takes into account children who are transitioning to adulthood 
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Who can have a care plan?

Any person can have a care plan. However, care plans are widely used for patients with chronic and complex healthcare needs where multiple supports are needed to maximize a child’s health and well-being.

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Why is care coordination and integration important?

Studies have found that having care coordination and integration can: 

  • Decrease hospital admissions 
  • Decrease healthcare costs 
  • Provide greater accuracy in prescribing medications 
  • Improve patient satisfaction 
  • Improve the quality of chronic disease management 
  • Provide better access to specialty care 
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Want To Learn More?

Check out our video series for families! Learn from the professionals in this video series on care coordination: 

What is care coordination and integration?

Social workers are key components of care coordination and integration. Learn how care coordination might look in your doctor’s office and who is involved in the process.   

What are the benefits of care coordination? 

There are many benefits of care coordination. Care coordination and integration can free up your time as a parent and can provide many other benefits as well. Learn what benefits and resources may be available to you.  

Who receives care coordination?

Many people in the United States can receive help from care coordinators. In this video, we discuss who receives care coordination and who can help you connect with a care coordinator. As the care coordination movement takes off, families will start to see this benefit in more and more places.  

What resources are out there to help coordinate care? What questions can I ask my care coordinator?

There are so many resources available to families and care coordinators can help connect you. Learn what resources are available and how you can ask for help.  


Resources for Physicians:

Thank you to our 2022 partners:

Dravet Syndrome Foundation, Epilepsy Alliance of America, Epilepsy Foundation, International Alliance for CDKL5 Research, Jazz Pharmaceuticals, NeurAbilities Healthcare, Phelan-McDermid Syndrome Foundation, Spina Bifida Association, Takeda, UCB  

The information on this page is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. Content provided is for informational purposes only. CNF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. 

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