Organizing Important Information

When caring for a child with special health care needs, families collect information, forms, and paperwork from doctors, therapists, school, and many other sources. Organizing and record keeping can be a huge challenge, but developing a system will make your life much easier, and can help your child to receive the best and most efficient care and services.

One mom says, "I did not keep my child's records organized. Some of it was in a file, some in a folder, and the rest was lost in a stack of papers and bills somewhere in my house. When his clinician asked for dates of procedures and diagnosis, I had to make phone calls and request copies of the information I had misplaced. Now, I no longer have that problem, because I keep all of the important information about my child and his needs in a binder. I take that binder with me to all appointments and can add new information and paperwork into it as I get it."

Another mom quoted, “I look at the Care Notebook as my son’s instruction manual! It gives me great peace of mind knowing that the vital information to keep him safe, happy and healthy is available in the event I am not there to communicate it to others. It is all about him, yes it has medical information, medications and contact numbers but it also has information about how to communicate with him and what he likes and absolutely dislikes, which are just as important.”

Although electronic health records have helped many organizations and individuals to store records in a central location “in the cloud,” electronic records sometimes add to organizational challenges: some of the information is digital and some is printed. It’s difficult to keep track of the various formats. Whether you choose to print everything, or to scan all of your child’s paperwork, aim to organize the information in one central place. This will allow easy access when this information is needed for appointments, applications, caregiver instruction, and emergencies. Develop a system that works for you, and stick to it.

There are many ways to organize information to have on hand when you need it:

• Some parents use a binder or Care Notebook for the most recent and important information, and as time goes on, they file older information away in a separate file.
• Many families have chosen to download and keep important information on a USB Flash Drive, which can be easily accessed on any computer with a USB port.
• Expandable files can be used for larger amounts of paperwork or records. Generally paperwork and medical bills older than 3 years can be discarded and shredded unless it is information relevant to a specific diagnosis or health care need and would be helpful for future appointments, procedures, or decision making..
• Cloud-based storage provides a ready-made virtual data storage solution, and is becoming more popular. When using a cloud storage service, make sure the service providers are following federal standards and regulations, such as the Health Insurance Portability and Accountability Act (HIPAA) and the Health Information Technology for Economic and Clinical Health (HITECH) Act.

As mentioned above, some families find a Care Notebook to be a useful tool to organize their child’s records. The Collaborative Care Notebook can be tailored to your child's specific needs by simply choosing and downloading only the pages you want. Individual notebook pages are available for download on the Care Notebook page.

Click the links below to download a full Care Notebook in English or in Spanish:

• Collaborative Care Notebook ( 9.8 MB) - From Utah Family Voices, this care notebook incorporates pages and ideas from various states. Use selected pages or the entire notebook. The Microsoft Word version is easy to edit on your computer.

• Collaborative Care Notebook ( 467 KB) - From Utah Family Voices, this care notebook in PDF format incorporates pages and ideas from various states. Use selected pages or the entire notebook.

• Portable Medical Summary ( 70 KB) - A 2-page form to keep track of medical information including diagnoses, medications, equipment, hospitalizations, and insurance. This could be carried with the person at all times or brought for short medical visits when the complete Care Notebook may not be needed.

• Completo Care Notebook ( 1.3 MB) - Al cuidar la salud de su niño con necesidades especiales, usted puede recibir copias e información de muchas fuentes. Un Cuaderno de registro le facilitara a organizarse mejor con la información más importante. Con un cuaderno de registros le será mucho más fácil para usted encontrar y compartir una porción de información con otros quienes son parte del equipo del cuidado de su niño.

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.