Autism Medical Record Storage

When my son was first diagnosed it was a mess. What we needed to do, how I felt and everything that everyone needed in order to do something. His autism medical record storage was an immediate issue and I like to be organized. Dad, you need to be and stay organized right now. You are going to be dealing with a ton of people, companies and simple idiots that will need documents, to view records or proof of this and that. You are also going to be come a master note taker.

Why do I do this and recommend for you to have your own autism medical record storage case? Because I use it all the time, it’s centralized, organized and I now have a process of when I get information, take notes, have medical tests, IEP’s and notes down and where they go. They are accessible quickly and sharable online or in email from my mobile device. It’s saved me a ton of time.

Autism Medical Record Storage

From the time your child is born you should be keeping medical records for them. These should be organized and centralized and accessible by loved ones in the event of a emergency. I can’t tell you how many times I’ve been burned in the past from when I needed access to or a physical medical record document for something. That time it takes to get it and people involved usually happen in the time of need and urgency.

Bottom line: you’ll be on a journey and speaking to a ton of people, most at inconvenient times and situations (think on shoulder of a highway late morning trying to take an important call and write down info). Take notes on EVERYTHING: who you spoke to, employee ID #, department, email,  time, date, reason of call and my favorite “who does what by when”. Log these in the appropriate folder after every call.

Here is my hit-list of what you’ll need:

• easy to use briefcase with 3 binder rings and / or folders (see example)
• 3-hole punch, pens, paperclips and binder clips
• possible 3-hole tab separators or 3-hole folders
• pad(s) of paper, 3-hole punched
• zip-lock style 3-ring sealable bag
• access to scanner or Kinko’s FedEx
• two to five 5 or 10 Gigabyte flash drives
• 5 copies (official ones) of birth certificate / custody papers
• DropBox account and the app on your phone/device
• Computer and Adobe Acrobat Pro

The Autism Medical Record Storage Folder

This is a great starting place and will eventually morph in to a series of these folders or a bankers box with folders. The main part of this is to start and stay organized. With all the calls I make weekly, who I talk to, get return calls, what they say and need – all while living and working a “normal” life it quickly becomes a mind-fuck. Don’t have a mess like this picture (and it’s easy to do).

The Storage Binder

You should have a binder where you can store papers and notes. This will go hand-in-hand with your online document process. Everything that goes in the binder realistically should go into dropbox too. Here is an example of my DropBox set-up, remember yours will look different and arranged logically the way you need it to be.

You can see that I have specific folders for blood draws, metals testing and genetics. Also IEP’s (which are important because they get shared a lot) to our process in the Vaccine Court and all those wonderful papers.

I make it a point to rename every file I upload a logical file name: Child-name-date-test-file dot whatever, usually a PDF. It’s super easy to share a folder with a person, see if they accessed it and remove them as well. If the people you are working with cannot use DropBox then please for the love of Christ find someone new that was not in their 50’s during the Regan era.

Important Autism Records

This is an ongoing growing list that is ever changing but I’d like to say that you should have individual sections for:

• The almighty “If this is lost please contact XXXXXXXX” sheet right at the front that is easy to read and use (think dummy-proof)
• Childhood pediatric records including vaccine schedule with lot stickers
• Copies of our individual drivers licenses (front and back) and copies of origional birth certificate for our child
• If you have custody paperwork it would be good to have copies with official notary seals 
• All insurance paperwork. Keep copies of the card as well (front and back) that is enlarged and easy to read. We have multiple copies ready to leave with someone
• May not be necessary but I also keep copies of tax information and recent pay-stubs
• Diagnosis of autism official reports, in copies to leave if necessary
• Important contact information- people you’d need to call 
• ABA, OT, PT provider(s) including contacts for administration, billing department, BCBA’s and team leaders
• All past medical tests, organized by type: blood, urine, hair and even by reasons we like to track progress on
• School information: contacts, special education programs, copies of reports and all IEP’s
• List of all medications, supplements and dosage info along with why they are used (super important for us as we do a lot of testing and changes in what is given and why based on results)
• Of course copies of our medical marijuana cards
• Ziplock 3 ring bag with pens, sticky notes, paperclips, $3 in change and a few single dollar bills
• Extra sheets of paper and folders
• All are scanned, updated and saved in the cloud, DropBox and the “regular required” are on zip discs

Having these all autism medical records confined to one space, a folder or a box with file folders is super-duper important for us. With life’s busy schedules, always trying to get new services, phone calls, messages, and appointments it’s easy to forget that one piece of paperwork, test result or document that someone wants, needs to move forward.

Remember that your autism medical record storage folder or box will be different. I’ve listed out ours and some suggestions that I could see others needing. The most important lesson here is to be organized: and ounce of prevention is worth a pound of cure. And God knows, a little luck and showing up early and professional helps too sometimes. Good luck!