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Featured Toolkit:

Next Steps: A Practitioner's Guide For Themed Follow-up Visits For Their Patients to Achieve a Healthy Weight
Next Steps: A Practitioner's Guide For Themed Follow-up
Visits For Their Patients to Achieve a Healthy Weight

Toolkit for Families of Children with Special Healthcare Needs - Epilepsy

Tool 5: Care Notebook

One of the most difficult things parents of children with special healthcare needs report outside of the condition itself is dealing with the tremendous amount of information and paperwork that they must wrestle with on a near-constant basis. We encourage family members to use a Care Notebook, something portable and accessible, to hold all documents and information pertaining to their child. The Notebook can be a three-ring binder or a small file box or folder. This notebook can be taken to all doctor visits and updated regularly with pertinent health information, including Care Plans, Seizure Action Plans, Medication Lists, Lab Reports, Insurance information and Doctor Notes. The notebook can also be organized to contain the child's extracurricular activities, therapies, IEPs, caregiver numbers, including babysitters, and any other information that relates to the child's care. We like to personalize the notebook by including the All About Me page on the cover or first page. Parents have found that the Care Notebook can help in the coordination of the care of their children with different providers and specialists, as well as managing the enormous amount of paperwork that comes their way. Click on the links below to see examples of care notebooks:

Care Notebook in English and Spanish 

Care Notebook Components 

Care Organizer 

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