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)
- Which of these pages could help you keep track
of information about your child’s health or care?
- Print the entire Notebook or choose just the pages you like. Consider printing extra of the pages you will use more.
- If you do not have access to a printer, contact your state’s Family Voices (FVAO) or Health Information(F2F) Center
- Which of these pages could help you keep track
of information about your child’s health or care?
- 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
1.0 MB)
Use selected pages or the entire notebook – customize. - 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:
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.
- ¿Cuál de estas páginas podría ayudarlo a
realizar un seguimiento de la información sobre la salud o el
cuidado de su hijo?
- 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.
- 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:
1.4 MB)
Use páginas seleccionadas o todo el cuaderno: personalice.
Sections of the Care Notebook, English and Español
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 (
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) ( 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) ( 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
Apps
- 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.
- For Android: Medical ID - Android ( 364 KB)
- For Apple: Medical ID - Smartphones ( 1.9 MB)
- For Android: Medical ID - Android (
- 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.
Resources
Information & Support
For Parents and Patients
Family Voices
A national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those
with special health care needs. Locate your Family-to-Family Health Information Center by state.
Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who
work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs
of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent
center in your state; U.S. Department of Education.
Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and
youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and
training.