Compiled ByParent to Parent of NYS

Family to Family Health CareInformation and Education Center

Section 1

Introduction

What is a Health Care Notebook?Your Child’s Life

• Medical history

• Emergency guide

• Reference book

• Resource guide

• Instructions/Care manual

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

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

Section 2

The Basics

Forms Included

• Child’s Emergency Contacts & Medical Information Form

• Directions to your house

• Family directory

• Family medical history

Section 3

• Childs Medical History

• Day to Day

Forms Included

• Diagnosis

• Immunizations

• Allergies

• Growth tracking

• Dental

• Vision

• Medications Log

Forms Included

• Hospitalizations

• Surgeries

• Lab & Diagnostic Tests

• Activities of Daily Living

• Daily Treatments

• Durable Medical Equipment & Supplies

Section 4

•Contacts

Contacts Include address, phone number and e-mail

• Checklist of Specialty Physicians

• Health Care Providers Directory

• School Information

• Family Support & Local Resources

• Contacts Log

ContactsInclude address, phone number and e-mail

•Physicians / Specialists•Therapists •Teachers•School nurse•School administrators•Agencies that provide services

Section 5

•Finances

Financial

• Health Insurance• Financial Support• Out-of-Pocket Expenses

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

Other Things to Consider

• Instructions for caregivers

• Typical behaviors or with illness

• Notes

• Transition planning

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

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

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

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.

 

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.