Monday, June 11, 2007

The 504 Meeting

Well folks, we finally had that second 504 eligibility meeting-- and I finally have a few moments to tell you about it.

Early Friday morning, Ryan and I take seats around a large circular table in the principal's office at Joseph's school. Our advocate sits across from us.

The principal (she wasn't a part of our first meeting), the school psychologist (L) and the School District's 504 person (SDP) are already seated at the table.

Noticeably absent are the School Nurse (B) and Joseph's teacher (Miss W).

"B will be in shortly-- she has to train someone last minute for a field trip," the principal tells us, "but I'm afraid Miss W can't be here... "

Oh no.

" ... her sister was in a serious car accident last night-- she's at the hospital with her right now."

For a moment, all I can think about is Miss W and her sister.

But then SDP starts talking.

She first explains that Joseph's "learning" (the criteria used in our previous meeting) is not being "substantially limited" by his diabetes, as demonstrated by his excellent grades.

Then she begins walking us through the requirements for protection under Section 504.

At this point, our advocate stops her-- saying that she's confusing 504 with IDEA -- another disability law -- and that learning doesn't have to be affected in order to be covered by 504. But then he also tells her that learning is affected by diabetes.

SDP responds by saying that she is very familiar with Section 504-- that she is the 504 coordinator for the District.

She insists that we need to consider another major life activity besides learning-- and then determine whether or not Joseph's diabetes "substantially limits" his ability to perform that activity.

"Glucose metabolism is the major life function most impacted by diabetes," she tells us.

Immediately, I agree.

"Now, the kinds of things we look at with respect to metabolism," she goes on, "are the number of 911 calls, the number of absences from school due to diabetes and -- now it says here that Joseph sometimes 'acts drunk' when he's low-- the nurse can tell us how often that has happened."

I listen very carefully, and then slide a document to the center of the table.

"I don't think anyone here can argue that Joseph's glucose metabolism isn't substantially limited," I say, pointing to the document, "especially if we look at the numbers. For example, from May 1st through the 29th, Joseph had":

  • 123 Glucose tests with a reading of greater than 200 that required treatment with insulin;
  • 62 Additional episodes of “mild” hyperglycemia (between 150 and 200) that, depending on how quickly his blood sugar was rising or how long he’d been “high” also required treatment with insulin;
  • 24 Episodes of hypoglycemia (less than 70) requiring treatment with glucose and additional carbohydrate;
  • 14 Additional episodes of hypoglycemia in which – though blood sugar was in the (low) normal range – Joseph experienced symptoms (due to a rapidly falling blood sugar) and required treatment.
Next, I share a letter from Joseph's endocrinologist-- in which she expresses her "strongest support" of our request for a 504.

In that letter, his endo also writes that even though we are "quite diligent in [our] pursuit of excellent metabolic control for Joseph, the reality of living with Type 1 diabetes in 2007 is that the patient experiences episodes of hypoglycemia and hyperglycemia weekly, often daily."

We discuss the contents of these documents for a while, and even though SDP turns out to be far more reasonable than I'd hoped-- she clearly still believes that Joseph would be fine with just a Health Care Plan.

"I realize that we've had a Health Care Plan in place that, for the most part, has been very effective," I tell her, "but we have had issues. I've got some examples right here-- in fact, just this week we had an incident. I'll read you a description":


On 6/6/07 at 10:35, Joseph telephoned from the nurse assistant’s office.

He had a low blood sugar of 49.

After instructing Joseph to take four glucose tablets, I asked to speak with the nurse assistant (K). I reviewed my concerns about the fact that Joseph has been having a lot of lows lately– more so on days when he’s had PE. And since Joseph just had a low and would be going into PE, I wanted her to have him check his bg before that class– and if vigorous activity was planned, I wanted Joseph to have extra carbs.

I also wanted the PE teacher to be made aware that Joseph had a low, and that he should watch for those behaviors that might indicate Joseph’s bg was falling.

This is when K told me that the PE teacher has been out– that a substitute is teaching PE. I asked if B (the nurse) had done an in-service with him to bring him up to speed on Joseph’s diabetes-- she said “I don’t think so.”

She then offered to have the substitute call me.

Ten minutes later, the PE substitute phoned me at home. I asked him if he’d received training about my son’s diabetes.

He said “no.”

I asked him if he’d seen the one-page Health Care sheet I’d put together at the beginning of the year for all of Joseph’s specials and substitute teachers (the PE teacher has one of these sheets).

He said “no."

I asked him if he was aware that my son wears an insulin pump.

He said “no.”

I asked him if he was even aware that my son had diabetes.

He said “no.”

"We want to ensure our son's safety at school, and we believe a 504 -- a legally binding document -- will help us do that."

A few moments of calm discussion, and then SDP instructs the school psychologist to change the criteria on the 504 evaluation from "learning" to "glucose metabolism."

Our conversation then turns to those accommodations SDP feels we should add to Joseph's 504 plan for middle school.

And for the first time since this whole process began, I feel like we're all on the same team.


18 comments:

Jonah said...

Awesome. Congratulations.

Scott said...

It never ceases to amaze me how people with diabetes are not only slighted with regards to 504 plans, but also the Americans with Disabilities Act (ADA). It seems that because the disease is invisible, the needs are too often marginalized. For example, restaurants that would have no problem building a wheelchair access ramp would fight bitterly any regulation that mandates them to disclose nutritional facts.

I'm pleased your meeting was productive, you should be congratulated ... and it looks like having an advocate proved useful in your negotiations with the school district!

Vivian said...

Congratulations on the headway. Joseph is very blessed to have you on his team. =)
We will be moving to a new school district this next school year and they have already told me that they do not do 504 plans. We will just have to see about that, yes?
Our kids will be safe if it is the last thing we do. =)

Major Bedhead said...

Vivian - like hell they don't - it's a federally mandated program. They HAVE to do them. They may not want to, but they have to. If I were you, I'd bookmark Sandra's other posts on the topic - you're probably going to need the phone numbers and advice that she got.

Sandra - Excellent! It sounds like they're not being as asshole-ish as I thought they'd be, given how they reacted before.

Schools hate 504s because it uses up resources that they aren't compensated for. If you get a kid on an IEP, the school gets money. 504s don't come with any extra funding.

Penny said...

Yay!!

Way to stick with it, Sandra.

Scott K. Johnson said...

Alright! Way to go!

cesnh said...

Congratulations Sandra, your hard work and patience are proof that persistence works. I think what bothers me the most from the school was the comment, "as demonstrated by his excellent grades." So, if Joseph didn't work hard to keep up - and it's obvious that there are days where he's had to struggle - then they'd agree to the 504 if he was failing.

Anonymous said...

I knew the school district would eventually agree to a 504 Plan because they are required to. But they do not have to agree to all the terms you ask. And they are only legally bound by what they do sign off on. You may have more haggling ahead of you. Bringing in the ADA advocate made all the difference, I'm certain. As well as documenting his BS at school, counting the episodes of high BS, low BS (we never thought to do that). Mentioning the Gym Teacher episode was a stroke of genious. They probably thought you had an attorney with you, LOL. P.S. When you get the final 504 Plan that the School types up, you may notice it is substantially different from what you agreed to or that important items were left out. Be sure to go over the Final 504 Plan with a fine-toothed comb. If anything is left out, you can demand they reconvene. P.S. Did the recalcitrant Type 1 School Nurse ever show up?

Anonymous said...

Yay that the meeting went well! You had your ducks in a row and that made all the difference. The frustrating part is, you shouldn't have to fight them on this, but I'm glad all turned out well.

Nicole P said...

Such good news on this progress, Sandra - makes me feel happy for you guys. Your preparation and your ability to stay reasonable amazes the hell out of me. I hope everything else goes well.

Hugs!
Nicole

Paige said...

Way to go, Sandra!

Kerri. said...

Terrific update!!! I'm so glad to hear that you guys fought the good fight - AND WON.

I bet looking at all those plants helped, right? ;)

mel said...

Sandra, I'm trying to find your email, but can't seem to! I had a question to ask; could you email me at orsa.aetas [at] gmail [dot] com?

Thanks!
Mel

deafmack said...

I am glad that things worked better for you. It is surprising that a supposed 504 person could be so mixed up about the different disability laws. I am proud of you for sticking up for your son. Great Job!!!

Amberthyme said...

It's amazing the power of one little word. Funny how changing the criteria from "learning" to "glucose metabolism" enabled them to do what was necessary. Hopefully you don't have to fight too many more 504 battles. Congrats!

Sandra Miller said...

Everyone--

Your words of encouragement and support mean a lot.

As always-- thanks.

Scott-

I came across some disturbing things while researching ADA/Section 504 law and its application to those with diabetes.

Ever since a 1999 supreme court decision (Sutton v. United Airlines) which made the consideration of "mitigating measures" (i.e., insulin) mandatory in determining whether or not an individual is eligible for protecition under ADA/504, many with diabetes (and other disabilities) have been left wide open to discrimination.

This has to change.

Vivian-

You are so right-- our kids will be safe.

Let me know if there's anything I can do to help....

Anon-

We got the final copy of the 504-- it has everything we agreed upon.

(Yay!!)

As far as that nurse with type 1-- no, she didn't show up. And really, even if we hadn't gotten the 504, I'm sure she would have taken awesome care of Joseph at school-- when he was in her care.

Problem is, she's not gonna be with him in every class, during standardized tests, field trips, after-school clubs...

Kerri-

Yes, those plants made all the difference ;)

Amberthyme-

I gotta say, I was really hoping we'd move the criteria from "learning" to "metabolism"-- since glucose metabolism is the "major life activity" that is directly impacted 24/7 by diabetes.

In fact, most of the documentation I'd put together for the meeting was centered around using metabolism as the basis for Joseph's eligibility.

It just couldn't have gone better. :-)

Lea said...

Hi Sandra,
I made my way over here on Penny's (My son has Diabetes) recommendation. I am a member of tudiabetes, and has posted a topic about 504 plans in the forum. My son will be going into the 4th grade, and his school principal has said "oh, you don't need one of those, we'll make sure he has everything he needs" , when I've mentioned it before.
I am glad to read that you had some success with the school, but it saddens me that you had to fight so hard, it sounded as if they take it so lightly.
Thank you for sharing your story. I will be heading down that road soon because things this past year were not good by any means and the nurse and I often struggled together to make the "outside world" see things our way.
congratulations to you and your son- You rock!!
Lea

Camille said...

My daughter was 504-ed in jr. high and we had our first "review" this past April as her sophomore high school year was winding up.

There were no teachers, the nurse was not there. It was just the assistant principal and myself. He did have comments from some teachers. My daughter has excellent grades and we have never had a problem with a teacher thankfully.

The AP was looking for reasons to take her off the 504 because he honestly didn't understand why she needed it.

He was extremely supportive though, as I explained about her struggles and possible complications of the disease, vision problems, amputations... (major life activity: vision; major life activity: blood circulation.) I am going to remember your tip about bringing documentation of all her visits to the clinic.

In high school they need that protection more than ever. High stakes testing, GPAs, long distances to the nurse's office, assignments or exams given while they are out of the room...

Thank you for sharing your experience.
(Last year, another assistant principal asked her about the pager she was wearing but she was prepared and gave him a respectful blast of information on insulin pumps and diabetes. One of her friends helpfully added, "and if you take it off of her she might die!" )