1. Compiled By Parent to Parent of NYS Family to Family Health Care Information and Education Center

2. Section 1 Introduction

3. What is a Health Care Notebook? Your Child’s Life Medical history Emergency guide Reference book Resource guide Instructions/Care manual

4. Goal/Purpose of the Health Care Notebook Easy access to important medical information Saves time/less stress Information is portable during an emergency Information is portable for meetings or Dr. appointments Positions yourself for advocacy

5. A Tool for your Child’s Care Provide instructions for caregivers Serves as a master index when historical information is important (Transition to adulthood) Helps Identify patterns of illness/behavior Assists with Transition Planning Requests for information Contacts

6. Section 2 The Basics

7. Forms Included Child’s Emergency Contacts & Medical Information Form Directions to your house Family directory Family medical history

8. Section 3 Childs Medical History Day to Day

9. Forms Included Diagnosis Immunizations Allergies Growth tracking Dental Vision Medications Log

10. Forms Included Hospitalizations Surgeries Lab & Diagnostic Tests Activities of Daily Living Daily Treatments Durable Medical Equipment & Supplies

11. Section 4 Contacts

12. Contacts Include address, phone number and e-mail Checklist of Specialty Physicians Health Care Providers Directory School Information Family Support & Local Resources Contacts Log

13. Contacts Include address, phone number and e-mail Physicians / Specialists Therapists Teachers School nurse School administrators Agencies that provide services

14. Section 5 Finances

15. Financial Health Insurance Financial Support Out-of-Pocket Expenses

16. Section 6 Links to other HCN formats Links for other health & safety concerns Parent to Parent of NYS Overview Parent to Parent of NYS Regional Listings and Contact Information

17. Other Things to Consider Instructions for caregivers Typical behaviors or with illness Notes Transition planning

18. Instructions for Caregivers Things to consider including Review Health Care Notebook Specify routines Daily living skills done independently Daily living skills with assistance List child’s favorite activities Review challenging behaviors Suggestions for challenging behaviors When to call for help/ who to call first

19. Identify Patterns of Illness & Behaviors Note behavior--a good/typical day Behaviors that present with illness Treatment plan Reactions to treatment Things that effect changes in behavior Suggestions/tips

20. Notes Include Dates Decisions made and by whom What happened What was the outcome What was the final decision Who made the final decision Why

21. Transition Planning Assists the child in taking ownership of and prioritizing their medical history Familiarizes the child with filling out medical forms and questionnaires Helps the child think in terms of daily routines and care needs Familiarizes the child with the entities that comprise their support system Provides a tangible tool to assist the child in managing their care. Medication schedules and other checklists can be developed to meet their individual needs.

22. Final Thoughts This is an Evolving Document You may find that you will modify how you are using it and/or organizing it down the line…that is OK!! Print additional pages from our Website at www.parenttoparentnys.org.