Planning & Record Keeping

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Tips and tools to help teens or parents or caregivers of children with special health care needs to plan, organize, coordinate, and keep track of everything.

  • Introduction to Care Coordination
    Brief description of care coordination and professionals that may be involved. 
  • Child with parents being looked at by doctorCare Notebook for Parents
    Families can download forms and create their own 3-ring binder organization tool to keep track of important information about their child's health care.
  • Care Organizer
    Learn about and order this tool that provides families with an expandable folder to organize and keep track of important information about their child's health care.
  • Care Plans for Parents
    Helps parents share important information with others who care for their child with special needs including doctors, nurses, therapists, emergency personnel, teachers, child care providers, respite providers, grandparents, friends and neighbors.
  • Teen Care Notebook
    Teens can download a version of the Care Notebook just for them to help keep track of important information about their own health care.
  • Care Plans for Teens
    Helps teens begin to manage their own health condition and share important information with others. It allows them to know about, understand, and participate in their own care.
  • Planning for Time Away from Home for Teens
    Helps teens get ready to spend time away from home.  Whether planning for a sleepover, band camp, or overnight summer camp, our worksheets will help you think through what your specific needs and how they might change while away.
  • Air Travel Preparation
    Read tips from other parents and a TSA Customer Service Manager, and find general and disease-specific travel resources, and download portable medical forms for your trip.
  • Emergency Preparedness for Children with Special Needs
    Planning information for families of children with special needs such as what to consider and what to pack in an emergency.
  • Teen Transition: A Parent’s Important and Changing Role
    Find helpful tips and resources for parents beginning to plan for their adolescent's life transitions.