Be Prepared, Stay Prepared

Over the years, I have tried to stay organized and keep medical records up to date for our son, Jackson, just in case I must go to the hospital for an unexpected stay. Recently, we had to resort to my medical care planning documents and I’m glad we had them.

After getting the idea from a friend who keeps her family’s medical records organized, I updated a folder with my son’s medical information. My husband is a very hands-on dad, but he isn’t as familiar with the details of our son’s medications, doctors, state programs, etc. I wanted to make sure he had everything he needed to manage Jackson’s medical care if I wasn’t there to help.

With any child with multiple disabilities, I think it’s a great help to have one place where you have medical resources such as doctors’ names and contact information. Here is my binder system:

• A binder with plastic pages and individual pockets where business cards can be placed 
• A list of exactly which doctor does what, along with the contact information and nurse at each office
• A general information sheet that includes diagnosis, primary physician and insurance information. I also include a scanned copy of the up-to-date insurance card, front and back
• A section that includes a very specific list of medications and their accompanying schedule. This list includes how and when a dosage is given and information on additional medications that are provided for less predictable incidences like seizures. It’s important to update the medication list when a new medication is added or a dosage changes. 
• A section that has Jackson’s guardianship papers. With him being over 18, my greatest fear is that someone would try to take over not knowing he is already in good hands. My husband would be able to find the needed papers quickly.
• A section includes a list of Jackson’s case managers for his various programs. Including the Community Living Assistance and Support Services Program, along with the phone number for the Financial Management Services Agency since we use the Consumer Directed Services option. 
• My last section is a contact list with names and phone numbers of friends who have kids on the same programs. They could aid and help guide my husband if needed.

This system gives me a little peace of mind and helps my husband if and when he needs to be in charge of Jackson’s care. Here is more information on creating a Care Notebook.