Care Notebook

Families of kids with special health care needs get information and paperwork from many sources. This Care Notebook is designed to help organize the information in one place to help both families and providers. It is available in English and Spanish.

Care Notebook

The Care Notebook is available to download or you can create your personalized book by choosing just pages you need. The PDF forms are fillable, so you can enter your child’s information on a computer or smartphone if you wish and save it online, or you can print out the pages and enter your child’s information by hand.

Follow These Steps to Set Up Your Child’s Care Notebook

  • Step 1: Gather information you already have
    • Gather up any health information about your child you already have. This may include reports from recent doctor’s visits, recent summary of any hospital stays, this year’s school plan, test results, or informational pamphlets.
  • Step 2: Look through the pages of the Care Notebook (see below)
  • Step 3: Decide which information about your child is most important to include
    • What information do you look up often?
    • What information do people caring for your child need?
    • Consider storing other information in a file drawer or box where you can find it if needed.
  • Step 4: Put the Care Notebook together
    • Everyone has a different way of organizing information. The only important thing is to make it easy for you to find again. Here are some suggestions for supplies used to create a Care Notebook:
      • 3-ring notebook or large accordion envelope to hold papers securely.
      • Tabbed dividers.Create your own information sections.
      • Pocket dividers. Store reports.
      • Plastic pages. Store business cards and photographs
    Care Notebook (PDF Document 1.0 MB)
    Use selected pages or the entire notebook – customize.
For additions to your Care Notebook, see the Forms for Education and Planning for Emergencies pages.

Cuaderno de Cuidado (Care Notebook en Español)

El Cuaderno de Cuidado está disponible para descargar o puede crear su libro personalizado eligiendo solo las páginas que necesita. Los formularios PDF se pueden completar, por lo que puede ingresar la información de su hijo en una computadora o teléfono inteligente si lo desea y guardarla en línea, o puede imprimir las páginas e ingresar la información de su hijo a mano.

Siga estos pasos para configurar el Cuaderno de Cuidado de su hijo

  • Paso 1: Reúna la información que ya tiene
    • Reúna cualquier información de salud sobre su hijo que ya tenga. Esto puede incluir informes de visitas médicas recientes, resumen reciente de estadías en el hospital, plan escolar de este año, resultados de exámenes o folletos informativos.
  • Paso 2: Revisa las páginas del Cuaderno de Cuidado (ver abajo)
    • ¿Cuál de estas páginas podría ayudarlo a realizar un seguimiento de la información sobre la salud o el cuidado de su hijo?
      • Imprima todo el Cuaderno o elija solo las páginas que desee. Considere imprimir más de las páginas que usará más.
    • Si no tiene acceso a una impresora, comuníquese con el Centro de información de salud de familia a familia (F2F) o la Organización afiliada de Family Voices (FVAO) de su estado.
  • Paso 3: Decida qué información sobre su hijo es más importante incluir
    • ¿Qué información busca con frecuencia?
    • ¿Qué información necesitan las personas que cuidan a su hijo?
    • Considere almacenar otra información en un cajón o caja de archivos donde pueda encontrarla si es necesario.
  • Paso 4: Arme el Cuaderno de Cuidado
    • Cada quien tiene una forma diferente de organizar la información. Lo único importante es que te sea fácil encontrarlo de nuevo. Estas son algunas sugerencias de materiales utilizados para crear un Cuaderno de Cuidado:
      • Libreta de 3 anillas o sobre grande tipo acordeón para sujetar papeles de forma segura.
      • Separadores tabulados. Crea tus propias secciones de información.
      • Separadores de bolsillo. Almacenar informes.
      • Hojas de plástico. Almacenar tarjetas de presentación y fotografías.
Completo Cuaderno de Cuaderno (Complete Care Notebook Spanish) (PDF Document 1.4 MB)
Use páginas seleccionadas o todo el cuaderno: personalice.

Sections of the Care Notebook, English and Español

Pages to create a Health Care summary Páginas para crear un resumen de atención médica
CSHCN Emergency Health Information Sheet Page 1 (Care Notebook) (PDF Document 129 KB)
CSHCN Emergency Health Information Sheet Page 2 (Care Notebook) (PDF Document 134 KB)
CSHCN Información de Emergencia (Emergency Health Information Page 1 Spanish) (PDF Document 227 KB)
CSHCN Información de Emergencia (Emergency Health Information Page 2 Spanish) (PDF Document 201 KB)
Doctors Appointments Page (Care Notebook) (PDF Document 47 KB) Página de Citas con el Médico (Doctors Appointments Care Notebook Spanish) (PDF Document 85 KB)
Diagnoses and Conditions Page (Care Notebook) (PDF Document 107 KB) Página de Diagnósticos y Condiciones (Diagnoses-Conditions Care Notebook Spanish) (PDF Document 158 KB)
Nutrition Page (Care Notebook) (PDF Document 75 KB) Página de Nutrición (Nutrition Care Notebook Spanish) (PDF Document 94 KB)
Diet and Tube Feed Tracking Page (Care Notebook) (PDF Document 79 KB) Página de Seguimiento de la Alimentación por Alimentación y por Sonda (Diet Tube Feed Tracking Care Notebook Spanish) (PDF Document 102 KB)
Growth Tracking Page (Care Notebook) (PDF Document 82 KB) Página de Seguimiento del Crecimiento (Growth Tracking Care Notebook Spanish) (PDF Document 112 KB)
Immunizations and Allergies Page 1 (Care Notebook) (PDF Document 75 KB)
Immunizations and Allergies Page 2 (Care Notebook) (PDF Document 68 KB)
Página de Vacunas y Alergias 1 (Immunizations Allergies Page 1 Care Notebook Spanish) (PDF Document 127 KB)
Página de Vacunas y Alergias 2 (Immunizations Allergies Page 2 Care Notebook Spanish) (PDF Document 99 KB)
Medications Page (Care Notebook) (PDF Document 62 KB) Página de Medicamentos (Medications Care Notebook Spanish) (PDF Document 100 KB)
Nebulizer Treatments and Vest Treatments Page (Care Notebook) (PDF Document 96 KB) Página de Tratamientos con Nebulizador y Tratamientos con Chaleco (Nebulizer Vest Treatments Care Notebook Spanish) (PDF Document 185 KB)
Catheterization Schedule (Care Notebook) (PDF Document 95 KB) Página de Programa de Cateterismo (Catheterization Schedule Care Notebook Spanish) (PDF Document 186 KB)
Respiratory and Breathing Notes Page (Care Notebook) (PDF Document 64 KB) Página de Notas Sobre la Respiratoria (Respiratory Breathing Care Notebook Spanish) (PDF Document 84 KB)
Dental Page (Care Notebook) (PDF Document 65 KB) Página de Dental (Dental Page Care Notebook Spanish) (PDF Document 90 KB)
Surgeries or Procedures Page (Care Notebook) (PDF Document 86 KB) Página de Cirugías o Procedimientos (Surgeries Procedures Care Notebook Spanish) (PDF Document 138 KB)
Lab Work Tests and Procedures Page (Care Notebook) (PDF Document 70 KB) Página de Laboratorio-Pruebas-Procedimientos (Lab Work Tests Procedures Care Notebook Spanish) (PDF Document 102 KB)
Event Tracker Page (Care Notebook) (PDF Document 61 KB) Página de Rastreador de Eventos (Event Tracker Care Notebook Spanish) (PDF Document 85 KB)
Seizure and Behavior Log (Care Notebook) (PDF Document 66 KB) Registro de Convulsiones-Comportamiento (Seizure Behavior Care Notebook Spanish) (PDF Document 95 KB)
Medical Supplies Page (Care Notebook) (PDF Document 56 KB) Página de Suministros Médicos (Medical Supplies Care Notebook Spanish) (PDF Document 84 KB)
Notes Page (Care Notebook) (PDF Document 31 KB) Página de Notas (Notes Care Notebook Spanish) (PDF Document 44 KB)
Pages to create a Care Team & Resource List Páginas para crear un equipo de atención y una lista de recursos
Health Care Providers Page 1 (Care Notebook) (PDF Document 63 KB)
Health Care Providers Page 2 (Care Notebook) (PDF Document 62 KB)
Health Care Providers Page 3 (Care Notebook) (PDF Document 64 KB)
Health Care Providers Page 4 (Care Notebook) (PDF Document 63 KB)
Health Care Providers Page 5 (Care Notebook) (PDF Document 64 KB)
Página de Proveedores de Servicios de Salud 1 (Health Care Providers Page 1 Care Notebook Spanish) (PDF Document 87 KB)
Página de Proveedores de Servicios de Salud 2 (Health Care Providers Page 2 Care Notebook Spanish) (PDF Document 86 KB)
Página de Proveedores de Servicios de Salud 3 (Health Care Providers Page 3 Care Notebook Spanish) (PDF Document 116 KB)
Página de Proveedores de Servicios de Salud 4 (Health Care Providers Page 4 Care Notebook Spanish) (PDF Document 114 KB)
Página de Proveedores de Servicios de Salud 5 (Health Care Providers Page 5 Care Notebook Spanish) (PDF Document 115 KB)
Family Support Resources Page 1 (Care Notebook) (PDF Document 62 KB)
Family Support Resources Page 2 (Care Notebook) (PDF Document 63 KB)
Family Support Resources Page 3 (Care Notebook) (PDF Document 63 KB)
Página de Recursos de Apoyo Familiar 1 (Family Support Resources Page 1 Care Notebook Spanish) (PDF Document 87 KB)
Página de Recursos de Apoyo Familiar 2 (Family Support Resources Page 2 Care Notebook Spanish) (PDF Document 113 KB)
Página de Recursos de Apoyo Familiar 3 (Family Support Resources Page 3 Care Notebook Spanish) (PDF Document 113 KB)
School Contacts Page 1 (Care Notebook) (PDF Document 66 KB)
School Contacts Page 2 (Care Notebook) (PDF Document 62 KB)
Página de Contactos de la Escuela 1 (School Contacts Page 1 Care Notebook Spanish) (PDF Document 119 KB)
Página de Contactos de la Escuela 2 (School Contacts Page 2 Care Notebook Spanish) (PDF Document 85 KB)
Emergency Contacts Page (Care Notebook) (PDF Document 64 KB) Página de Contactos de Emergencia (Emergency Contacts Page Care Notebook Spanish) (PDF Document 90 KB)
Personal Contacts Page (Care Notebook) (PDF Document 82 KB) Página de Contactos Personales (Personal Contacts Page Care Notebook Spanish) (PDF Document 123 KB)
Contact Log (Care Notebook) (PDF Document 52 KB) Registro de Contacto (Contact Log Care Notebook Spanish) (PDF Document 77 KB)
Notes Page (Care Notebook) (PDF Document 31 KB) Página de Notas (Notes Care Notebook Spanish) (PDF Document 44 KB)
Pages to create a Care Plan Páginas para crear un Plan de Cuidados
Care Schedule Page 1 (Care Notebook) (PDF Document 59 KB)
Care Schedule Page 2 (Care Notebook) (PDF Document 59 KB)
Página de Horario de Atención 1 (Care Schedule Page 1 Care Notebook Spanish) (PDF Document 69 KB)
Página de Horario de Atención 2 (Care Schedule Page 2 Care Notebook Spanish) (PDF Document 71 KB)
Mealtime Routine Page (Care Notebook) (PDF Document 85 KB) Página de Rutina a la Hora de Comer (Mealtime Routine Care Notebook Spanish) (PDF Document 119 KB)
Therapy Page (Care Notebook) (PDF Document 103 KB) Página de Terapia (Therapy Page Care Notebook Spanish) (PDF Document 179 KB)
Activities of Daily Living Page (Care Notebook) (PDF Document 58 KB) Página de Actividades de la Vida Diaria (Activities of Daily Living Page Care Notebook Spanish) (PDF Document 82 KB)
Social Experiences Page (Care Notebook) (PDF Document 62 KB) Página de Experiencias Sociales (Social Experiences Care Notebook Spanish) (PDF Document 108 KB)
Recreation Page (Care Notebook) (PDF Document 79 KB) Página de Recreación (Recreation Page Care Notebook Spanish) (PDF Document 114 KB)
Communication Page (Care Notebook) (PDF Document 58 KB) Página de Comunicación (Communication Page Care Notebook Spanish) (PDF Document 82 KB)
Communication Milestones Page (Care Notebook) (PDF Document 96 KB) Página de Hitos de Comunicación (Communication Milestones Care Notebook Spanish) (PDF Document 143 KB)
Coping and Stress Tolerance Page (Care Notebook) (PDF Document 63 KB) Página de Afrontamiento-Tolerancia al Estrés (Coping and Stress Tolerance Care Notebook Spanish) (PDF Document 108 KB)
Mobility Page (Care Notebook) (PDF Document 58 KB) Página de Movilidad (Mobility Page Care Notebook Spanish) (PDF Document 83 KB)
Social and Play Page (Care Notebook) (PDF Document 74 KB) Página de Social-Juego (Social and Play Page Care Notebook Spanish) (PDF Document 83 KB)
Rest and Sleep Page (Care Notebook) (PDF Document 58 KB) Página de Descanso-Sueño (Rest and Sleep Care Notebook Spanish) (PDF Document 82 KB)
Transitions and Looking Ahead Page (Care Notebook) (PDF Document 72 KB) Página de Transiciones-Mirando Hacia el Futuro (Transitions and Looking Ahead Care Notebook Spanish) (PDF Document 104 KB)
Notes Page (Care Notebook) (PDF Document 31 KB) Página de Notas (Notes Care Notebook Spanish) (PDF Document 44 KB)

Other Sample Notebooks & Care Forms

  • Building Your Care Notebook (AAP)The American Academy of Pediatrics provides a central place with links to several forms from many states. For families that are new to making care notebooks, we suggest you pick one form and try filling it out before downloading other forms.
  • Focus Sheet (Word Document 27 KB)This form helps parents decide what they want to focus on during the appointment with the doctor and includes places for questions (behavior problems, family needs, etc.); places for things to bring (lab results, reason for visit, etc.); and places to write thing to remember after the appointment (next visit, treatment plan, etc.).
  • My Health Passport (FCIC) (PDF Document 539 KB) This passport can be filled in with important information to help health professionals Commented [T5]: I looked on this one, and it is all auto-download too, so we are not alone .Commented [T6]: Not sure this is great enough for us to list on our final page. It is an old looking form, comes up on my PC as two columns and jumbled. Needs rework. I would say leave it out.Commented [T7]: This is great better support children with special needs during hospital or clinic visits; Florida Center for Inclusive Communities.
  • Mi Pasaporte de Salud (Spanish) (PDF Document 621 KB)

Apps and Technology

Cellphones and Tablets have changed the way we keep and view information. These days not many people leave the house without a cell phone, which makes them a great tool. Many families are using app technology instead of paper to keep track of their complex child’s needs and information.

Smartphones

There is a standard medical ID built in on newer smartphones (Apple IOS and Android models) that could be used for teens and young adults. It has an area for medications, doctors, and emergency contacts. While this will not be a complete medical record, there is a surprising the amount of information available, including a link to medical records. The information is for the owner of the smartphone, so this option would be for teens and young adults, and might encourage them to take a more active role in their health.

Apps

Here are a few examples of health tracking apps. By searching your app store, you may find more are being developed all the time.
  • Caremap devloped by Boston Children’s Hospital is a secure place to put the most critical information about your child’s health, emergency care, allergies and medical history. It is shareable with family members, teachers, and caretakers. For Apple devices only.
  • Medical ID is a standard Medical ID that could be used for teens and young adults to take an active role in their health care. It is available for Apple or Android phone and keeps records of medications, doctors and emergency contacts. While this is not a complete record, it is a good basic summary with links to medical records. It is designed for the cell phone owner.
  • Child Health Tracker The Child Health Tracker APP by Healthy Children (a branch of the American Academy of Pediatrics) is handy because it stores your child’s medical information, healthcare providers, and a medication tracker. It also has information from AAP about immunizations and more. For Apple devices only.
  • epsy is a free seizure tracker for epilepsy. It helps you track and manage seizures, triggers and medication for more clarity in everyday life. It is HIPPA compliant and a great tool to share important information with your child’s neurologist.

Authors & Reviewers

Initial publication: June 2008; last update/revision: April 2022
Current Authors and Reviewers:
Reviewer: Tina Persels
Authoring history
2008: revision: Gina Pola-MoneyA
2007: first version: Barbara Ward, RN BSR; Juan Carlos VasquezR
AAuthor; CAContributing Author; SASenior Author; RReviewer