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

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

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

13. ContactsInclude 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 CaregiversThings 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.