Online, Shared Document (etc) Management for Family/IEP/Therapy

June 3, 2015 8:48 AM

One of my children was just given a rather complicated diagnosis that will require many doctor's appointments, therapy visits (across at least four professional domains (speech/language, OT, etc.)), and IEPs. I was just cleaning out my filing cabinet to prepare for the onslaught of paper, and it's already overwhelming; just getting to this point was already a nightmare of people losing paperwork and telling us 12 different things in 12 different conversations. There must be a way to track all this in the cloud, right? Help me figure out the best tool for us, and give me any tips if you've done something similar.

I want both a tool/application AND any tips you have on undertaking this specific task! The primary users will be my husband and I, using Windows and Android. (We have one iOS device but that's primarily used by the kids.) It's possible that we might give someone like grandma or a hypothetical nanny access at some point, but it'll mostly be for two users.

I will want to:

Upload IEP documents, probably as PDFs (they still give me physical printed documents)

Tag documents so I can both find the most current one, and refer to older ones.

Archive older, inactive documents so they're still accessible but not right on the front page of stuff I'm working with.

Upload other documents, including school disciplinary records. Some will be text formats but most will probably be PDF scans

Import (or copy) e-mails so we can reference them later. We both use gmail for family e-mails; at present I tag all e-mails related to this and archive them.

Keep a to-do list, or multiple to-do lists, for ongoing actions ("set this OT appointment")

We use Google Calendar for our family calendar presently; I am willing to either integrate with Google Calendar or to keep a separate calendar within the document management program. Not so much for ongoing actions but so that we can look back and see when a particular appointment or action was.

Track contacts for a variety of service providers (and archive old contacts)

Keep a phone log, meeting notes, etc.

Ideally be able to attach many types of documents to a master timeline or something -- so, like, an "Occupational Therapy 2015" timeline and have meeting notes, e-mails, phone logs, appointments, and report documents all attached to the main timeline

Easy to reference in real time (such as in meetings), but also reasonably easy to export in some fashion if we want to export a document to provide support for an insurance claim, or e-mail something to someone.

Relatively secure, since these are educational and medical documents. Doesn't have to be CRAZY secure, but a reasonable amount of secure. (I will redact things like SSNs.)

Something that won't disappear on me like a fly-by-night startup.

Will be LESS hassle than keeping zillions of paper copies in a big filing cabinet.

Free is good, but I am willing to pay for something that works really well and I know will work for us. I am also open to considering other organizational schemes -- if I am reinventing the wheel and there are already great tips online for how to do this, or perfect tools, please tell me! I'm just starting out, I'm not married to my organizational scheme.

posted by Eyebrows McGee to Computers & Internet (15 answers total)

I use a secondary gmail account for google drive with a harder password. My "usual" gmail account has rights to the folder for docs. All IEP and DX emails go to the secondary email addy (that's the one we give out) and it is set up to forward all emails to my "usual" gmail account as well.

I group things yearly, and just dig. The fail on this is that Google does crap to PDFs sometimes, depending on how you upload it (I usually also email to myself so that I can just forward the PDF).

You can set up a secondary GMAIL calendar for appointments and tracking and tasks; just this summer I set one up for "sumemr camp" and listed all the camp possibilities until we moved our final choices to the primary calendar.

This relies more on google drive folders than actual tagging, but I find the text search robust enough to cover it. They do have "starring" which lets you do some pre-appt organizing - star the most current relevant docs for an appointment.

I also have a fax number through fax.com (I think they bought what I was using) and all my faxes come to me in email as PDF.

Not sure how to handle the PRIMARY TIMELINE outside of a journal within Google Drive.
posted by tilde at 9:10 AM on June 3, 2015

Oh man, I feel for you.

This is not what you want to hear, but this is my experience. For a couple of years, I tried hard to put everything in the cloud (via Google docs, mainly), but over time (and particularly in dealing with the public schools) I've come to find that the best way to track all this, believe it or not, is a huge three-ring binder that I carry with me from appointment to appointment and put everything in.

I keep a to do list in the front, then a calendar book (with archives, so I can track when we had meetings; I also track phone calls in this paper calendar); then a tab for each provider, with the newest paper documents in front.

It sounds crazy, but it means that I can reference stuff right in the meetings, people can take things and make copies, and I have all the notes in one place that I can get to wherever I am.

More than anything, though, it means I can easily share the documents with different providers because they can just pull one out and make a copy of it.

Sorry that's not a cloud based system, but, as I said, over time I found it became much more of a hassle to put everything into the cloud based system than it was to simply punch holes in the reams of paper documents I was handed everywhere I went (and no electronic copies available, sorry).
posted by anastasiav at 9:15 AM on June 3, 2015 [5 favorites]

You can add attachments to Google Calendar events, especially items in Google Drive. I'd create a new calendar and give you and your husband full access to it. There is your master timeline.
posted by Rock Steady at 9:33 AM on June 3, 2015 [2 favorites]

This sounds like something Slack is set up for. They are a start up, albeit a fairly stable seeming one.
posted by matildatakesovertheworld at 9:44 AM on June 3, 2015

I did this years ago -- our kiddo is now 23, so thankfully all the IEP and Section 504 travails are history for us -- and I used binders. If I were doing it now, though, I think I might use Evernote (maybe supplemented by a binder for key documents.)
posted by merejane at 9:45 AM on June 3, 2015

If you already have a windows tablet or ultraportable laptop Microsoft OneNote is a good replacement for a 3 ring binder, and can be shared among users on the Cloud using MS's cloud storage OneDrive. It's free at the moment and because it's part of MS Office it will be a pretty familiar UI. It has a ton of tutorials and templates online. You can record audio, quickly scribble notes with a stylus or your finger then clean it up later, use tags, and it has a good search function. There's no obvious way to sync it with any calendar app other than Outlook, but if you're willing/able you could use something like IFTTT.

Evernote would work reasonably well for this. Google docs, as described above, would also be good (though I've gotten so distrustful of Google's willingness to keep services the same for more than six months that I'd make sure to back everything up elsewhere).
posted by Wretch729 at 9:45 AM on June 3, 2015

Response by poster: I'm not anti-binder for current documents, but I'd have to be dragging litigation boxes around to keep all past documents handy, and if we've learned one thing from our problems with the school this year, it's that we're going to need to reference past documents.
posted by Eyebrows McGee at 9:59 AM on June 3, 2015

Best answer: I am 90% certain Evernote would satisfy all your needs, and is available on every platform so you will always be within arm's reach of your data.

Evernote's automatic OCR search of PDFs *and images* makes it tough to beat by just about any other system. I use my camera phone to file paper-paper stuff into it and those documents are surprisingly well searchable given my crooked-ass sometimes not-fantastically-focused pictures.
posted by Lyn Never at 10:27 AM on June 3, 2015 [2 favorites]

Best answer: I used Evernote for this stuff when my partner was sick/awaiting his liver transplant. Lyn Never's point about searching is what was most useful. I can guarantee I wasn't using it as well as I should (and what it sounds like you would) but I could always copy (read: DUMP) stuff into there and know it was there and know I could find it when I needed it. As a person who hoards information in situations like this but is also horribly disorganized, it was a life saver.

It was also useful because I could access the information through a browser in case my phone wasn't working and I needed to get show something to a doctor or nurse, I could use their desktop quickly without it being "a thing."
posted by MCMikeNamara at 11:03 AM on June 3, 2015

Mere mortals can get One Note? Oh, forget everything I said. One Note rocks for this.
posted by tilde at 11:34 AM on June 3, 2015

Best answer: Nthing Evernote - we use it for this sort of thing and it's wonderful. Everything we need "at our fingertips" gets scanned in, is accessible by both of us (we share a login) via phone or computer, and we can tag things or use specific 'notebooks' and 'notes' to hold various things. We get by with the free version.
posted by VioletU at 5:38 AM on June 4, 2015

Not to add one more thing, but you should check to see if the health system (if it is one) where you child was evaluated and will have his/her OT/PT/ST/Etc has an electronic medical record that you can sign up for. That way, you can quickly access labs, clinic notes, etc. via the internet if need be (particularly if you're at specialist who is not part of that health system).
posted by kuanes at 7:50 AM on June 4, 2015

but you should check to see if the health system (if it is one) where you child was evaluated and will have his/her OT/PT/ST/Etc has an electronic medical record that you can sign up for.

By the way, if you do have an electronic system like that in play, watch out for what happens when they turn 12 (may vary slightly by state) and you can't access their records anymore. There may be a waiver your child can sign, but it may still not give you full access (or the system may be too poorly written to do so properly).
posted by Lyn Never at 1:14 PM on June 4, 2015

Response by poster: Evernote it is, I've spent the morning scanning documents and diligently tagging. So overwhelming, but at least I can now see the last two years of documents all in one place without worrying I'll lose them.

I have a couple binders lined up on my desk with the "binder-ready" documents on top of them so I can decide which binder I'm going to commit to. (So silly, but -- how thick? Does I use a 3-ring or one that perforates the edge rolodex style? Rolodex-style is easier to access in the binder but a bit messier to file later ... SO MANY DECISIONS.)
posted by Eyebrows McGee at 8:47 AM on June 8, 2015

A latecomer's advice: it was easier for us to keep medical, therapeutic, and educational hard-copy documents in one file, in chronological order, rather than separate binders for each specialist. Doctors would ask what the teachers had said, or vice versa. Also, hard copies of key documents like the current IEP or 504 plan get put in a sheet protector or other see-through plastic sleeve inside the binder, so they're easy to find quickly.

My son loves Dr. Seuss's The Lorax, who "speaks for the trees"; I regret that his education has involved SO MUCH paper, often not even printed on both sides!

Good luck and kudos on your organized-ness so far.
posted by homelystar at 10:05 PM on July 13, 2015