Tuesday, August 31, 2010

Preparing for battle...

I have read the scenario a hundred times. Each time I would sit there and think about how lucky I was that I didn’t have to deal with all that mess, but here I am- in my own 504 battle. I don’t understand why things have to be difficult. I am not asking for anything crazy… I am only asking for a written plan of the accommodations we already have in place.

Asking too much??? I think not!!

Let me back up to the beginning(short version, of course) because you would THINK that a child in 4th grade who was diagnosed almost two years ago would be all set with his 504 plan- right?

Yeah, I know, I am feeling like a big, suckity mama right now~ k

Backin up…

Insert Diabetes… lets face it, I didn’t know my brain from my ass when Justin was first diagnosed (That is just reality my friends). I didn’t give a rat’s pa-tootsie about anything but carb counts, insulin factors, BG checks and making sure Justin was safe in the beginning. Making things better… Justin’s team is wonderful and I have never been given a reason to worry about “paperwork”. But the reality is, I can not sit back and wait for something to smack me upside the head before I get this “stuff” in order. I need to have it there before anything happens.

Please continue to bear with me as I make my way to present time.

Right after school ended last year, I came in to meet with the school guidance counselor, Ms. P to review Justin’s 504 plan. I expressed my concern with her about how Justin’s 504 did not have many of accommodations needed to cover D. I gave her my “proposed” 504 and told her this is where I would like to start.

Please keep in mind that my “proposed” 504 was an example 504 printed off the JDRF website.
I removed many things that were not needed for Justin and went from there. NOTHING out of the norm, nothing crazy and I wasn’t expecting the world. Ms. P took the proposed plan and asked that she send it to her supervisor to look over. “Sure”, I said. Again, nothing crazy was on there.

I had also asked her if we could coordinate one big team meeting to discuss Justin’s care during the day(i.e. signs and symptoms, what to look for, what to do). One meeting= less time and everyone on the same page before school starts. Everything sounded good, nothing was signed but we planned to get together before the new school year begins. Not a problem except I never got a call. I ended up contacting her. Okay, school hasn’t started so let’s get this going.

Insert about two weeks ago…(see almost there). We will focus on 504 plan first.  (Bored yet?)

I'm So Bored

Long story short… I was stopped the night of meet-n-greet by Ms. P. “I spoke to my supervisor about the 504 and we are only allowed to do the standard plan”. Standard plan?!? Isn’t a 504 suppose to meet the INDIVIDUALIZED needs of the student?
When exactly did standard and individualized start meaning the same thing???
What The Hell?
I seriously need to check my thesaurus because I missed the boat on that one.

It comes down to this… they want to put everything on his care plan and write “see care plan”.

A few of my concerns with this arrangement are as follows…

- Why am I going to make his care plan into a big document that none of the teachers want to read. Keep the care plan to what it is… A PLAN FOR HIS DAILY CARE. Focus on the basics that keep him safe and save the legalities for the 504.

- A 504 needs a parent signature. The parent and school agree upon it. A care plan does not even have a space for a parent signature. Though our awesome school nurse gives me the courtesy of looking it over and suggesting changes… this IS just a courtesy and what if all nurses are not as courteous?

- The 504 follows Justin each year, granted you make updates, but it is easier to keep than to add (obviously). The care plan does not follow you... it is started fresh every year.

- Another concern I had was that the teachers were not held liable for the care plan as they are for a 504. However, the ADA said that if the 504 states to “follow the care plan”, they are just as liable to do so.  

Moving on…   

Meet-n-greet was on a Thursday and I was asked to get back with Ms. P Friday morning. I did not do so until Friday afternoon because I had to make a few phone calls… hence my apology.

Here was my reply to her:
Ms. P
I apologize for the delay in getting back with you. I am trying to figure out a way to approach Justin's 504 that we can all agree on. I was put at ease about an attached care plan to list Justin's specific daily diabetes accommodations. However, there are a few adjustments we may need to make to the 504 that has nothing to do with a specific care plan. Personally, I would rather not clog his care plan up with details that do not pertain to his daily care or testing needs. I would really like to have the care plan in place(or at least created) before we work on the 504. I will work on a rough draft care plan over the weekend and cross my fingers that it will be in place on Monday :). As soon as the care plan is in order we can focus on the 504. I hope this is okay with you.

I apologize for the inconvenience. We have been very blessed with the care provided for Justin and I hope I have not suggested otherwise. I just need to make sure Justin's plan(s) will provide him the opportunity to receive the best education possible despite the challenges he faces.

Thank you for spending the extra time to get this all worked out.

She did not reply to this email and I sent it 11 days ago. I get the feeling she has been avoiding, which is okay as it gives me planning/sorting time. Today however, I popped in her office to mention we still needed to get this done and mentioned my email stating we would need to make some changes. She said we would need to schedule a time for her supervisor to come in because she told her what to do.


Okay, supervisor it is. I did however ask point blank… “The standard 504 plan in ALL she is willing to do right? Because if she is willing to work with me; I will prepare for the meeting a lot differently than if she is only willing to have a “standard plan”.

I promptly received a phone call from her this afternoon to set a date. She is scheduling it at a time when his regular classroom teacher will be able to attend…. I asked “why”?
“Because when we have a 504 meeting, we ask that the team be in attendance” (this is a first).

It sounds as if they are going to push the “does this pertain to a fair education” strategy to try and keep a few things off the list.

Paranoid much??? Ummm~ yep!

So that’s where we are today. We have a meeting with the “team” to go over the daily care plan… a week and a half AFTER school started. I have already meet with some. BABY STEPS PEOPLE…. BABY STEPS :)

I will keep you posted on my quest for a fair 504 plan. In the meantime, as I prepare for battle, I leave you with this…

This may be a new battle I face, but know that I have faught many simmular battles before. I do not have the option to loose, I do not have the option of fear. My son's future depends on my victory and I will not let him down. I will go down as his advocate, his mom and with any luck... his hero.

You have been warned!


Amanda said...

I agree! WHY must it be so difficult?! I got the whole "a care plan is enough, you don't really need a 504" crap. The "we'll call you" crap...it goes on and on.
GOOD LUCK!! I hope your meeting is good and that they don't mess with you.

Denise said...

You have to be his advocate and the law stands by you. Good luck!!

Heidi =) said...

Go Lora!! Good luck to you!

Meri said...

These people that are supposed to be working in the best interest of our children...the NURSES no less...they are not doing just that. They are not thinking of Justin, they are thinking of their liability. I am dealing with very similar stuff here. They can suck it. Why work for the school system if you are not ready to advocate for the child?

Hallie Addington said...

You're doing a great job, Lora! You will rock it - no doubt. FYI- our 504 meeting was me, the nurse, and her teacher. The teacher has always been there. And as a teacher, I'd want to be there, too. Just for my information and so I could keep the child as safe as possible. That's just me.... but- I wanted to throw it out there that having the teacher there does not necessarily mean that they will put up a fuss with the accomodations. At least not from my experience.
As you know, it's not really a choice that take care of him and allow him the "least restrictive environment". I know you'll fight for your sweet boy! I'm always here if you need me. You know I'll fly down and kick some a$$ if I need to! :)

Cindy said...

Oh, the bureaucracy! Gotta love the public education system, right? I swear they can take the simplest task and turn it into five pages of directions. I'm applauding your determination to be your son's advocate! Stick to your guns and don't back down! Good luck!

Heidi / D-Tales said...

Gregg and I ask ourselves that very same question all the time. I mean ALL THE TIME! Why does it have to be so difficult??? We don't get it either.

We fought a similar battle. So I feel your pain and frustration.

Know that I'm rooting for you! Good luck!!!!

Unknown said...

BRAVO!!!!!!! I'm praying for you and will walk alongside your fight!

Unknown said...

I'm with you today in spirit my friend. You are a strong and educated woman you will advocate and get things situated for Justin. I, too, don't uderstand why things have to be so difficult. I went through a bunch of Mularky a couple of years ago and am not looking forward to the day I have to go THERE again.

Misty said...

Good luck Lora! I know you will do great. I've asked the same question...and wouldn't they want this for their child?

marshfam said...

The more I hear about everyone's struggles working with the schools, the more afraid I am for Aust to start Kindergarten next year! I guess I know I'll need to start working with the school this spring. Luckily I do know one other D mom that has children in the same school, so maybe she can hold my hand through getting him set up. So sorry for your struggles, but you're right, it's a fight worth fighting!

LaLa said...

You are a bad ass and we are behind you 100%!
Hey - I'll chip in to have Ms. Candy Hearts fly on over and help you out!

In all seriousness - you can totally do this. You are amazing (people say that all of the time but I REALLY mean it).

Go Lora!

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