Special Needs

Care Binders

I have been reading some of the organizational posts here, and am wondering if anyone does something like the care binders suggested by the Children's Hospital of Philadelphia:   http://www.chop.edu/service/family-centered-care/organizing-your-care/?  If you click on the Care Binder for Parents/Young Adults links, you'll find detailed information on how to create one, what to include, and printable forms/worksheets to include.  Basically, the binder would include everything medical about the child, from day to day care, to recurring doctor's appointments, to medical and therapy reports, progress notes, etc.

We are planning to put something like this together for our sons, so that if anything ever happened to us (or even just one of us, and one is left to take everything over we now share), our children's guardians could use the binder like a manual of sorts.  In our case, we will also include education information, such as their IEPs, report cards, progress notes, and other pertinent school information.  As our boys age, we hope to help them gradually take over their own care, through the use of the binders.

Is there anyone who has something similar and can give me tips, ideas, pointers, advice?

Re: Care Binders

  • I have one for both of my son's.  I basically put most anything I get about them in tere because I have realized I usually regret tossing even seemingly useless items.  I keep it easy because I find teh more complicated it is, the less likely it is I will keep up on it. 

    Front- Current picture/index/Emergency COntact information

    Section One:

    Medical- list of doctors including specialists and their contact information

    Milestones- A list of milestones and when they are reached

    A list of medications

    List of Vaccines

    A list of current diagnosis

    Current physical/daycare/school release 

    All appointment summaries with most current in front

    Section Two:

    All Evaluations (EI, School, etc)

    Section Three:

    Academic- All progress reports, report cards, IEP

    (for the baby this is just his EI/IFSP stuff)

    Section Four:

    Specialists (I separate these reports from his PCP reports just for ease of access- we see the PCP a lot due to illness/asthma/allergies).

    Section Five:

    Misc stuff that may eventually have it's own sections but so far doesn't

    This works for me and keeps me organized and helps me not lose items. I will likely eventually have a section for Medicaid/HCBS Waiver stuff and as they age will need to make more sections (SSI/SSD, etc).  I'm interested to see how others do it!

    Mommy to L (6), J (4) and S (March 2013)

  • I have one for my whole household

    Our first section is "Medical"

    I then made a section for each family member.

    In each of the kids section I put

    -a current picture

    -a copy of their insurance card including the subscriber information

    -babysitter release forms so that if someone is watching them and needs to sign for medical services they can

    -babysitter information sheet

    -a summary sheet including diagnoses, medication dosages and frequency, school information, therapist information, and a list of doctors and contacts

    -i also made a sheet with their current tylenol and advil dosing

    -i also have a sheet for seizure emergency procedures, what to do if they see one happening and when to call 911

    the only thing i haven't gotten around to is making a sheet for the car/carseat like assembly has. both boys are nonverbal and cognitively delayed so it would be helpful in case of emergency 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • Both my mother and my son's legal guardian have met and been to appointments with DS's two main professionals as well as his pedi practice. 
  • We have a medical care binder and a separate education binder. We put duplicate audiograms and vision reports in the education one and duplicate developmental/assessment reports in the medical binder to share with the dev pedi.

    I like to keep them separate because we access them in different ways, and the school does not need all the medical info (and vice versa) It also helps you keep track of what you have shown to whom.

    The medical binder is organized by Neuro, Genetics, Eyes, Ears, Dev Pedi, Ortho, Dental, non-EI therapies, research papers and websites we have visited for future reference. I do a written report for most doctor visits so that I remember what we talked about and also jot down stuff I want to bring up at the next appointment as I think of questions.

    There are business card holder sleeves in the front. Any dr. who has seen Nate has a card in there. The more frequent ones are on the first page of cards and the less frequent are on the third page. We also have a pencil holder type thing with a disk of his most recent MRI and his immunization book.

    I like my binders. Let's people know that I mean business and that I will remember stuff they say and tests that they run.

    WAY 2 Cool 4 School
    photo 4dce26cd-2fbe-4296-9bd4-89e87890c303.jpg

  • Thank you!  These definitely give me some ideas of how to organize.  I appreciate your tips!
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