Gathering Important Information
You need to collect all the information you can. Parents are handed a lot of information over time to keep track of. We'll talk about how to organize it all in the "Get Organized" section a little later but for now lets focus on collecting it. (The "Forms" button will take you to documents that will assist you in collecting this information.)
There is a basic set of questions that people will be asking you repeatedly. It will be most helpful to have this information right at your fingertips whenever you see a brand new physician, go to a new hospital or facility, see a new therapist, or have lab work done. This will include birth information (height, weight, gestational age at birth, APGAR scores, etc.), and additional information regarding any adverse situations and/or problems with pregnancy including labor and delivery. A current health history including lab tests with results, initial exams with notes, and diagnoses that lead physicians to believe that there is a problem with your child. All of this information will need to be readily available. We suggest that you keep a portable, detailed record in a three-ring binder. You, the parent, need to be responsible for maintaining your own personal copies of all records. No one else is going to do this for you.
Given the new HIPA Act, it will be easier and less expensive for you, the parent, to request any tests, results, treatment notes, etc. as they become available at the various offices, hospitals, or facilities where you receive treatment. It becomes more difficult and financially expensive to gather the information once it has gone into an archive and has been filed. It is best to obtain copies of these records as soon as possible after your visit. We suggest you request a copy while you are still in the office. At the end of your visit you should see the receptionist and request a "Release of Information" form. Inform the receptionist that you want a copy of the paperwork from your visit and would like it either sent to your home address or made available for pick up. When you fill out this form, you will be allowing the physician's office to release the information to you with your permission. (They have to have your permission to send it out to anyone...including yourself - yes...our eyes are rolling too.) Waiting too long to make this request will result in a fee for the retrieval and copying of your file.