June 3, 2007

When the path of least resistance isn't


Us (out takes)
Originally uploaded by Citizen Rob.
(Before I tell this story, I feel like I need to make something very clear, because it's sort of confusing. The program that I am discussing in this delightful rant is affiliated with Schuyler's school system, but they are not actually a part of the school itself. They operate on school grounds and work closely with the teachers, but their rules and administration are all their own. Schuyler's school district rocks the house and we are entirely pleased with the job they are doing. Scared yet?)

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You know how sometimes you feel like telling a long story, and then other times, when it's the same old crappy story on a brand new shiny day, you feel like just saying "Oh, fuck THAT" and never talking about it ever again?

We had a run-in with Schuyler's after school program, now her summer program, on Friday. On Friday at about 5pm, to be precise, when it was determined by the site director that Schuyler did not have the proper forms, in particular a "Medical Action Plan" (an animal whom we'd never heard of before), and would not be able to start the program on Monday, thankyouhaveaniceweekendbye.

Oh, fuck THAT.

I think I jumped right into Angry Dad mode, without much of the usual polite buildup. I don't feel apologetic or regretful, though. Julie spoke to the site director and called me to tell me the whole story, including how she felt like she had been shut down. These were the rules, it was our fault for not following them (even if we were never told about any of this, which apparently we should have been when we registered and, oh yeah, PAID for it), this is the way it was going to be, no exceptions, bye.

One thing that Shepherds of the Broken who have been in the fight for a while can tell you is this: the first answer you get from any program is almost never the final answer. The first answer is almost always the answer that provides the least effort for the program. That's not always a bad thing; most schools are overextended and need to streamline their workload as much as possible.

But in this case, it was at Schuyler's expense.

I called the program myself and was irritated to find that no one was answering the phone, because of course, it was after hours. This bomb had just been chucked at us on the way out the door. Fortunately for us, however, the site director also needed to fax the required form to Julie at work, and the fax hadn't gone through correctly. When she called to find out what was wrong, Julie asked her to call me because I was really pretty upset by this whole thing.

"Why, so he can yell at me?" the woman asked. "I don't need that."

I called her personal voicemail and mentioned that since she didn't want to talk to me on the phone, we could meet on Monday when we came to pick up Schuyler, who would in fact be attending that day. She called me back shortly thereafter.

So here's the short version. When a special needs child attends this particular program (which is connected with the school district but is apparently more autonomous than I'd thought), the program requires that a Medical Action Plan (in my head, it has an exclamation point at the end) must be in place with specific instructions on what to do in the case of an emergency. Let me say right now that I am in 100% agreement with this policy. Well, obviously.

The problem I had was that Schuyler has attended this program for the past year now. The only change is that she'll be at a different campus for the summer program. It's the same program, and the requirement for the Medical Action Plan(!) has applied all along.

I was slightly proud of myself for thinking of this particular argument early in the conversation, because it stopped her cold.

"So my problem isn't with the action plan," I said to her. "I think the bigger issue is why she was allowed to attend all year without one in place. If this plan is as important as you say it is, then it seems like your program has been operating in a pretty serious violation of the rules. Maybe the law, too."

In retrospect, I think I put her in a pretty difficult position. Either the Action Plan(!) is a very serious requirement and the program has been operating dangerously without one for almost a year, or it's one more piece of idiotic paperwork, and everyone can settle down and deal with Schuyler like a human child rather than a case number while we get the stupid Medical Action Plan(!!!) filled out for them. By the time we got off the phone (on polite terms, which was sort of a miracle considering what a dick I was at the beginning), we'd all agreed on the second option. Schuyler will attend the program, and we'll get the plan from her doctor in Chicago as soon as we can.

The thing that I think is important to note here is that the argument that Schuyler was somehow being neglected before is completely bogus. The program site director at her regular school is awesome and went to great lengths to meet with Schuyler's teachers and the school nurse. She became an expert in Schuyler's special needs, which at this point are not actually all that special.

Schuyler has some minor dietary restrictions for her swallowing disorder, meaning that things like crackers, chips, hard cookies and hard candy are out. It's also good to know the ASL sign for "potty", because if you make her stop what she's doing and spell it out on her device, things are probably going to end sadly. When the girl's got to go, she's got to go. And of course, there's always the (at this point theoretical) possibility of seizures, Schuyler's own personal Sword of Damocles.

So the site director at Schuyler's school knows all this, she's made sure that the whole team knows it, and it has been a very safe environment for Schuyler as a result. Did the site director fail to file an actual Medical Action Plan(!), or did the program fail to send that plan over to the new campus?

I have no idea, and really, it's not my problem. We made sure the team at her regular school knew what she needed, and Julie called the summer site director to personally make sure that her summer team knew what to do as well. They didn't, and they freaked out, and they decided that the easiest course of action was to simply refuse services to Schuyler until their bureaucratic requirements were satisfied.

Oh, fuck THAT.

9 comments:

  1. Good for you! I'm so glad (and relieved) that this was resolved in Schuyler's favor.

    Much of my work with companies is devoted to showing them that where systems and policies are allowed to trump employee autonomy and individual initiative, they will always fail. What's depressing is how often those individuals will try to wield the bureaucracy as their own personal weapon. This lady sounds like a bit of a chump.

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  2. Good for you! You are a warrior for sure.
    Sadly this is a country that wants just easy robot kids to deal with. Any kid that doesnt fit that mold or description along with his/her parent is a problem and must be dealt with it and there is a form that goes along with that.
    Way to go, you inspire and lead by example for all special need parents.

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  3. I am standing and cheering for you. Schuyler is SO lucky to have you and Julie as parents.

    Oh, and the proper, snarky, bloggy/internet way of expressing it might be Medical!Action!Plan!

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  4. Woohoo! I love this story, esp. the resolution.

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  5. My daughter is in highschool now & WHAT A PAPER TRAIL !!!! Also,our school system just CUT the special needs afterschool program AND chopped at the summer school piece as well... I am NOT happy and well,,just tired of the BS. We used to have our IEPs in May NOW I request them earlier ~ due to the fact WHEN and IF you ever dispute over them ... there isnt much time left bfr summer takes over.. the IEP includes:EXTENDED YR/EXTENDED DAY (summer prog)SO if disagree ~ waiting on Sept.and relying on the old IEP til the new is signed and agreed... I dont like to fight BUT chopping at the disabled BITES. Another parent/Dad asked the staff how they sleep at night? I laughed my butt off cause there's soooo many things one daydreams of saying! All and all, we as well have a GREAT program.(per eval.s)

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  6. Anonymous8:52 AM

    Why in the world it couldn't have been approached with a "Julie, Rob, oh my God, we don't have Schuyler's Medical Action Plan(!) on file and the state won't let her come to us without one! Do you have it? No? Aaah! What's your doctor's name and fax number and we'll get a form out to him right NOW so we can have everything ready to go and she can join us and have a great summer! At worst, she might have to miss Monday until we get things taken care of"?

    Ah, yes. Because somebody is a pretentious lazy [deleted].

    Good on y'all for enforced parental dickery. It's not wrong when you're right.

    P.S. -- Julie will not sleep through the Apocalypse. Schuyler will be leading it. (On the side of The Good, of course.) Which means that you will get the Special Dadly Dispensation to go upwards.

    She'll have to do some negotiating, though. And probably some nifty swordplay.

    (Julie got her Special Wifely/Momly Dispensation many years ago, so no worries there.)

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  7. I have type 1 diabetes, and growing up, I noticed that it's mostly substitutes and administrative types that cause problems. I never really had problems with regular teachers, but subs and vice principals always thought I was lying.

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