Monday, June 29, 2009

Warning, this is boring

BUT, it could be essential to a few of you so I will torture the majority to help the few who I have been told need some help! I was recently asked how to manage paperwork for a child with a medical issue. Depending on how far back you have gone on my blog, you may know that I have a son on the autistic spectrum. The amount of evaluations, tests, reports, diagnosis’, etc. is unbelievable. The challenge of how to manage this began for me when he was 3. We had gone through 1 ½ years of figuring out what was going on, what seemed like a million assessments, pages and pages of reports and then ended up entering him into a program through out school system. Their evaluations and findings and then their plan for him was a stack in itself! For those of you in the loop on this, you know I am talking about IEPs. Now, I don’t know if this has the same name in every state but in Florida, that is my son’s Individual Educational Plan and I’m sure every state has something similar. It outlines what the school will do for him, how, when, by who, and on and on. Also outlines what they expect from him so I know what our current focus is. It must be done once a year but based on your child’s progress, they could do many a year. These forms are on top of every other assessment and testing that it done! James is going into 5th grade and we will be doing his 13th IEP at the start of school!

As an informed parent, I want to be able to provide input in my son’s meetings. I want all his information at my fingertips and I want to be on top of it all! BUT, I don’t want to be crazy. I don’t want bags or bins or books of paperwork and I don’t want to be overwhelmed by it and looking for things while others are waiting on me. And it takes a while to get to the point I’m at but I don’t want his paperwork and issues to be a constant ‘thing’ in our lives. If I had to see his paperwork all the time, I would think about it all the time. I need it when I need it, otherwise I want it in order and out of my way!

So, here’s my system. I will assume that you are into this many many years and will talk about how to catch up with yourself.

First, in order to reach an end goal, think about the point. Why do you keep the paperwork? You want to know what from it? Many questions come up over and over that you just need at hand like his birth (preemie? Issues? What medications did he have?) and diagnosis (who, when, what exactly) and then of all the evals and tests and IEPs what stands out as the important information?
-Change in services, label, therapist
-Need that was pinpointed for the first time
-specific scores from a test
-quote from a report that carries some weight
Determine when you look at each piece of paper what it is you need from that piece of paper. What sets each IEP or eval apart from the others.

Here is where you want to start-

  • Buy a notebook or folder that is Large and Durable
  • Pull out all your paperwork and sort it-this is the hardest part. Make stacks doing the following:
    -Keep anything that has specific DATA pertaining to your child. You want to toss anything that is generic. For instance, the letter that was sent home to schedule the IEP and the legal document they give you at every meeting. Sure, keep one of those if you want it (it’s online if you need it) but it is not pertinent to your child’s history. Get rid of anything that is not specific about your child! Because we don’t want to do things twice, if you have a lot of paperwork, as you look at each document, highlight the date and the info from each that are most important and set that document apart from the others.
    -Sort Chronologically. After glancing at each paper, first set in a stack by year. If you have lots of loose papers like a 5 page IEP, make sure you sort it so they stay together. Once you have everything sorted by year, sort again so that you are now chronological.
  • Recap this Data. Now that you have your crazy stack (or stacks if one will fall over!), go to your computer and open a new document.
    -Call it something that makes sense for you as you will use this file for a long time—mine is called James’ Overall Medical History. The goal is to have a chronological list of everything that is pertinent. If you fill this with things like “5-5-07 went to speech therapy” this will not work. The only entry you would want for speech is a start date with a specific therapist, test results, something huge that may have occurred and an end date with that therapist. If you are asked ‘When was he in speech therapy?” you can answer this quickly.
    -Start with your first item (oldest) as your first entry. Keep it short. This is not a story, it is a collection of data. For an example, here is what James' first entry looks like-
    March 26, 1999
    Born five weeks early. RDS. Ventilator for 5 days. Nicu for 2 weeks. Had pneumonia—treated for seven days. Jaundice—phototherapy for two days. Slight heart murmur—presumed normal. Reflux—started on Cisapride (propulsid) and Zantac. Hearing test completed and was normal

    -Put that first document in the folder. After your entry, that paperwork (my example, this would be only his final discharge paperwork, not the daily reports or receipts or charting info or extra paperwork, just the recap report) goes in the notebook, so it ends up in the BACK! When you open your book and you are done, the top item under your recap is the most recent item.
    -Make a tab for this item, if you think you will need to refer to this often. This is the only thing that I don’t have a clear ‘rule’ on. If it’s an IEP, I have a tab for it (label says, for example, 7th IEP, 9-05), if it’s a big test like IQ, I have a tab on it. If it’s a final report from an SLP that has nothing very interesting on it, I recorded the data, file it in order but didn’t put a tab on it. If I need it, I can see it on my chronological recap sheet and find it easily.
    -Keep going, recap and file, recap and file.
  • Print your data recap and put it on the top, when you are done and it is ALL there. This is how my document looks. My header followed by each entry with date and then 1 or 2 sentences detailing each item.

  • The next time you have a meeting, take your notebook and answer any question within seconds! Here is how mine looks with the tabs. You can see that it's simple, not grand but easy to follow and easy to find anything I need.

  • Behind all this, I have his year end report card in a page protector sleeve. Each sleeve has a grade on a file label sticker. My son is entering 5th grade. When I get his 2nd grading period report card, the 1st one is garbage as the 2nd one covers that too! By the end of the year, you do NOT want 3 or 4 report cards as long as the data is retained in the final report card—throw the extras away! So the 4th grade sleeve has the final report card (shows all grading periods), final IEP report card (FL has a separate one), and his FCAT scores report. That's it! Here is a picture of my grade sleeves. If you look closely, you will see that I have an empty sleeve ready for 5th grade so what you see is the 4th grade sleeve behind it. Simple with not a lot of paperwork at the end of each year.
  • If your book is being made for a younger child or a child who visits other therapists and doctors with this notebook, you will want other documents. Use another page protector so that you can get documents in and out of it easily and copy his birth certificate, social security number, immunization records and insurance card. Those things are always asked for so have them available! Now that James is older, I took that stuff out but I had it in there for years.

How to move forward is your next question right? This should be easy now. When I get a new IEP or document, I enter it and make a tab and reprint my recap document. When he gets a progress report, I may just stick it in the folder for now but the next meeting I file it correctly and am updated within minutes. All documents should go here and you should continue with this format and it will always be updated.

To help you determine how to write your recap, here are a few entries from mine. You can see they are short, precise, specific. In order to be respectful of his privacy, these scores are quite old and I'm sharing generic stuff from the last several years! There are entries with some pretty serious tests listing lots of scores and they are very at a glance so I and any professional can quickly grasp his results. In case you wonder, he is mainstreamed, very smart, adorable and a bit quirky but hey, I think I am too so whatever! He is the sweetest child you could meet and one of the reasons he is doing so well is because of these insane reports and all the school does for him!

October 26, 2001 Arnold Palmer. Updated Speech evaluation completed using The Rossetti Infant-Toddler Language Scale. Completed at 31 months. Findings—Pragmatics 18-21 months 100% (highest level of test), Gesture 24-27 months 100% (highest level of test), Play 33-36 months 100% (highest level of test), Language Comprehension 21-24 months 100% (same as before), Expressive Language 9-12 months 100%, 12-15 months 92%, 15-18 months 86%, 18-21 months 66%. Goals include identifying action words in pictures, understanding size, saying two and three word phrases. Email to family of progress included with evaluation for further detail. New OT evaluation also done. His play is at the appropriate age but he is behind due to lack of attention span and very low frustration level.

February 13, 2003 3rd IEP to add OT and update his speech goals. He is using sentences, though difficult to understand, and has many words. The SP added precise goals regarding specific things she sees a pattern of (velar fronting, syllable reductions, stopping). His OT goals include working on writing skills, fine motor with buttons and zippers, new foods, and less pushing as this relates to sensory input.

September 14, 2005 7th IEP. Major change was for testing. Lots of accommodations—increase or decrease in time, variation in instructional methods, seating, get his attention before giving directions, outline of activities, break assignments into segments. Also special testing papers. Also flex scheduling, setting and presentation on and standardized statewide test. Goals increased to age level but the accommodations were the basis of this change. No Modifications made—full curriculum is required of him.

April 24, 2006 OT evaluation. Pediatric Potentials Rehab. Poor visual tracking. Vestibular processing difficulties. Low kinesthetic awareness. Hyporesponsive to tactile, taste, vestibular and proprioceptive input. Hypersensitive visual and auditory input.

November 26, 2007 Auditory Processing Evaluation. Disorder identified, mostly in right ear. Given a FM amplification system which he started using late December.

December 3, 2007 10th IEP. Added alphasmart which he has been using in the classroom for a few months.

You can see I'm not redundant with issues. There was a LOT more on his 10th IEP but it was nothing new. For us, All IEPs talk about how he has organizational issues but the only time I mentioned it is when a solution is being implemented as that is the one time that it really was relevant and not just everyday info about him.

I hope this makes sense and was helpful! Sorting and getting it recapped in a new document will be the hard part but maintaining it will be a breeze, I promise!!!

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Amber said...

This one wasn't boring at all. I love to stop by your blog on occasion and see what your latest project has been...they are all so inspiring, but this one is definitely a favorite. My daughter is 7 and autistic and I have a file box I put all of her paperwork in, but I think this is just fantastic and I may have to steal it and pass it off as my own ;-)

The Pretty Neat Company said...

Oh I'm glad it will help you! Your daughter is at the perfect age to get a grip on the BOX as things aren't as hectic as when she was transitioning from toddler to prek to elementary school. It seemed like there was always a huge new thing to get through but now she's on her path. I'm sure that box has lots of emotional weight to it. Clearing through it, focusing on the data and getting it in a manageable format should help a bit! Doesn't change things but it's frustrating that you have no control over the situation and I at least felt a bit more empowered when I am in control of the history and communication and paperwork involved! Don't know if that makes sense but it was something important to me . . . Let me know how it goes and if there are things that aren't working or that I didn't cover. I'd love to work more with families that need help organizing special needs situations and would love to know if other people are dealing with different paperwork issues that I haven't had.

SarahB said...

Thank you so much for this post! I have recently been planning to make a medical banner for my little guy who has had many dr's visits in his not-quite-16 months. I will definitely be using your tips!

I'll also start a folder for school like this - my oldest starts kindergarten soon!