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Keeping Medical Records

When caring for a child with special needs, you will probably accumulate a large amount of medical records, bills and statements. You may be wondering what to do with all of this "stuff.'' The best answer is to create a system to keep records in order. A good medical records filing system is very important for anyone, and even more important for a child with special health care needs. Keeping medical records is much easier once you have a system in place, and will also help you to inform clinicians, specialists, or school officials of your child’s needs and past care. Here we offer some solutions for keeping track of medical records. Try our methods, or adapt them so they work for you, making sure to keep filing new information as it comes.

What should I keep on hand?

Many children with special needs have ongoing needs, and being able to quickly find certain documentation, especially when talking with doctors, insurance companies, and other providers is important to help your child receive the best and most efficient care.
We suggest that you keep track of current medical information in a 3 ring binder or a "Care Notebook," compiling there the information and forms you will want to find quickly. You’ll want to update the care notebook regularly, rotating out older information, and storing it in your long-term files, so that it is easy to find the most up-to-date information in the notebook. This could include:
  • Current medications – including the name of the medication as well as the dosage and the pharmacy contact information
  • Immunizations – children and young adults entering college need to have current information on immunizations
  • Health History and Diagnosis information – including procedures/surgeries, diagnoses, allergies, etc.
  • Documentation from testing and lab results
  • Hospital discharge papers
  • Contact information for medical providers
  • Emergency information contacts

What about all the bills, claims, etc.?

The next step is to create a file box or hanging file to store other important records, such as:
  • Medical bills you receive from healthcare providers
  • Explanations of Benefits showing claims that have been paid by your insurance company
  • Medical bills you have paid
  • Receipts and records for out-of-pocket expenses
File these records in reverse order with the most recent first. This will allow you to find the most current records first.

How long should I keep medical records?

It is generally recommended that you keep all bills and claims that are in progress. Keep such records until treatment and payment are complete, and up to one year after that in case there is a reimbursement dispute. Some people choose to keep these records even longer if they contain information that pertains to the treatment of an ongoing health condition. If you have tax-deductible medical expenses, keep related records for six to seven years after the tax claim. When disposing of medical records, be sure to shred anything with your personal information to prevent medical identity theft.
We know that devising and maintaining a system to keep medical records can be overwhelming, but the work you put into organizing records will make your life much easier in the long run, and will benefit your child. Take your time. You could even try doing a small amount each week until your system is set up, and all the records are in the right place. Then try to take a little time each week or month to make sure you’ve maintained your organizational system. Once you have it all organized, you might be surprised how easy it is to find what you are looking for.

Resources

Information & Support

For Parents and Patients

Collaborative Care Notebook (Word Document 9.8 MB)
From Utah Family Voices, this care notebook incorporates forms from many other states. Use selected pages or the entire notebook. The Word version is easy to edit on your computer.

Tracking Medical Bills (Word Document 125 KB)
This form, developed for Tennessee's Family Information Notebook, provides a way to track bills including dates, insurance company, who paid, and more. For a PDF version and other forms, see the Care Notebook page.

100 Day Kit (81 pgs) (Autism Speaks)
Downloadable family-oriented guide from Autism Speaks. Offers an overview of ASDs and aims to help parents organize and prioritize their approach to seeking services for their child. Practical information is provided emphasizing advocacy and family support. Several forms are available to assist in the organization of medical records and tracking the effectiveness of treatments.

100 Day Kit, Spanish (84 pgs) (Autism Speaks)
Family-oriented guide, in Spanish, from Autism Speaks, downloadable from the linked site. Offers an overview of ASDs and aims to help parents organize and prioritize their approach to seeking services for their child. Practical information is provided emphasizing advocacy and family support. Several forms are available to assist in the organization of medical records and tracking the effectiveness of treatments.

Authors

Author: Tina Persels - 1/2016
Reviewing Authors: Gina Pola-Money - 2/2016
Shena McAuliffe, MFA - 1/2016
Content Last Updated: 8/2016