Monday, May 28, 2007

504 Insanity

Two months ago I wrote a post about our efforts to get a 504 plan put into place for Joseph.

Well, I finally had the 504 meeting (on May 8th) with Joseph's teacher, school nurse and school psychologist. The next day, our team's evaluation and 504 plan were submitted to the School District.

I thought we were all set.

Until last Tuesday-- when I received an email informing me that the School District's 504 person (SDP) "is concerned that there is not documentation" that Joseph's diabetes is "affecting a 'major life activity,' as narrowly defined by the 504 law and guidelines."

You've got to be kidding me.

SDP also feels that because my son "has demonstrated through test results and grades that he is a high achiever and thus he is learning adequately" our 504 team must meet again "to reconsider criteria for a 504 plan, with [SDP] guiding the team through this discussion."

It gets worse.

SDP believes that "there may not be a justification for or need for a 504 plan at this time" and when we meet, "will have suggestions for the transition to middle school and working with the middle school staff" regarding Joseph's "health care plan" and "any possible accommodations that may be appropriate."

Damn it!

I'm tired.

Really, really tired.

But if they want a fight, that's exactly what they'll get.

So far, these are the steps I've taken:

  • Forwarded SDP's email to Joseph's endocrinologist, along with an urgent plea for a letter stating the reasons why she believes 504 protection is both appropriate and necessary for my son.
  • Spoke with an attorney at the Office for Civil Rights and was told that I can file a complaint if the District refuses the 504. That Joseph should indeed qualify for 504 protection.
  • Contacted a Legal Advocate from the ADA, read him SDP's email and asked for help. His response: "I want to be at that meeting."
  • Sent an email to my JDRF support group's leader asking for names of those who've been through this battle before-- and won.
  • And finally-- not slept.
Since Tuesday, I've been scouring the internet, reading every possible document I can find on Section 504 law.

I've also been worrying.

Because several weeks ago a secondary school principal told me that we were not going to get a 504 for Joseph-- that "the District will never go for it-- they just don't do 504 plans."

She's never even seen one.

But that's not all.

For you see, while the middle school we've chosen for Joseph is awesome, and (get this) the school nurse there has Type 1 Diabetes and wears a pump herself, she is adamantly against 504 plans for kids with diabetes.

How do I know this?

She told me.

Last fall, at an ADA Safe at School Seminar on how to create a 504 plan, this nurse joined the audience and played devil's advocate throughout the presentation-- even after the seminar, going so far as trying to talk those parents in attendance (including me) out of doing 504s for our kids.

Also, Joseph's endo informed me at our last visit that "many times" their clinic has "butt heads" with this nurse over the issue of 504 plans for her patients.

Bottom line-- if I don't put this thing in place now, it's gonna be A LOT tougher getting it next year when we'll be dealing with this nurse.

So there it is.

If any of you have gone through this process successfully, please share your stories.

Based upon what criteria was your child deemed eligible for 504 protection? Was your child doing well academically? How did you overcome any resistance to the 504?

Oh, and by the way, SDP has scheduled our meeting for June 8th -- just one week before school lets out.


For those unfamiliar-- Section 504 is a federal law that protects a child with a disability from discrimination and ensures that accommodations are made for their condition (i.e., allowing a child with diabetes to test their blood sugar in the classroom, re-take an exam if their blood sugar is low, etc... ).

If you have a child with diabetes, and that child attends school,
you want your child recognized as "eligible for 504 protection" and you want to put a "504 Plan" in place.

A Health Care Plan alone is simply a guide-- not a legal document. In other words, no school district employee is legally required to follow it.

For more information, go here and here.


George said...

Oh my goodness Sandra. I wish you and Joseph the best of luck.

I wonder why that nurse would "butt heads" with anyone about this when she is a type 1 herself?

..M.. said...

Ditto what George said. I so don't get this ongoing drama. From my point of view, surely anyone at any school could see why insulin dependence would warrant a 504?! This stuff us crazy!

Good on you for fighting it - and for telling us all about it. I'll be waiting for the happy ending!

Shannon said...

What. the. f'ing. h#ll!!!!!!!!!!

I can't even wrap my head around this situation. I'm completely furious for you and what you have to do.

What is it with them and 504 plans....and this is a different school?????

I'm so sorry you have to fight. We're here to support you in spirit. I really wish I could fight the fight standing by your side.

Shannon said...

Nevermind, I thought Joseph was going to a different school in a past post and that this was the one.....

I see you're dealing with the same dopes.

Scott said...

Sounds like a royal pain ... I would bet that the nurse is against 504 plans mainly because it means more work for her, nothing more. Also, when she was in school, there were no such things as 504 plans, so her logic is probably, I survived fine without one, so can everyone else. That doesn't make it right, but at least you can see where she's coming from!

Nicole P said...

Oh. I am so furious for you Sandra. I LOVE though that you're using every resource at your disposal - and have EVERY confidence that this is a battle you WILL win. I'm so sorry that you're having to fight again, though.

And how in hell can the "SDP" conclude that type 1 diabetes doesn't affect "a major life activity???" Um - eating - getting nourishment - isn't that a major life activity?

I wish I could be of assistance, but I've never been through this. I'll be thinking of you guys.


denise said...

I don't get why they are resistant! The 504 plan protects the student and the school. My daughter's school pushed through the 504 plan even though I did not see a need for it at this time. She is in 3rd grade and is a good student. Since kindergarten, they have allowed her to delay reading tests and other evaluations if her blood sugar was not in the proper range. For instance, if she was too high before a math quiz, her teacher would let her take the test later that day or retake the quiz if she found out she was low or high during the test. The state mandated standardized tests were scheduled in April and the school officials said we needed to get the 504 paperwork signed before the testing week so she could make up tests when her blood sugar was out of range. The school did not want to violate the state guidelines, but knew there might be instances where she could not sit for a 3 hour test. It worked great because she had a very high reading one morning and was allowed to make up the test that afternoon. In this situation, the 504 protects the student and the school. The child with diabetes is allowed the opportunity to do her best possible work and the school gets higher scores out of a student that feels well enough to take the tests. Please let me know if you need any additional information about our school district. Good luck and I am sorry you are having to fight this battle!

Sandra Miller said...

George & M-

It blows me away too that this middle school nurse -- who has type 1 herself -- is so against giving kids with diabetes 504 protection.


You said it.

And you know, it's not even the folks at his current school that are giving the most resistance-- his teacher and school psychologist (504 coordinator) are totally supportive.

Although our elementary school nurse did write next to her signature on our 504 evalulation: "I feel the Health care Plan meets this request."

I could have killed her.

But now, it's actually the School District we're dealing with.

And what they say applies to every and any public school Joseph attends.


Royal pain, indeed.

The middle school nurse is actually very good-- she even received a distinguished service award this year.

I think your second theory-- that she survived fine without a 504 herself -- is probably at least part of what's going on.


I'm not letting this thing go until Joseph has a 504 plan in place.

His teacher (who also proctors SATs at the secondary level) told me that if he were in an exam and needed to take a break (for a low or to use the bathroom) without a a legal document, she couldn't make those accommodations and not have them impact his test results...


That is awesome.

Wish we lived in your school district. :-)

I'd love to know more about how your daughter's 504 eligibility was determined.

In order to qualify for 504 protection, "a child must have a disability that substantially limits a major life activity." Examples include: "walking, seeing, eating, hearing, breathing and learning."

What "major life activity" was used on your daughter's plan and how was the substantial limitation demonstrated?

Believe me, this feels like such a stupid question, but obviously my school district is clueless.

In addition to everything I've been reading about this law, I need some real-life examples of how similar cases (child with diabetes who is doing well academically, but still requires accommodations, treatment and adult supervision at school) have qualified for 504 protection.

Feel free to email me directly if you'd prefer.

Thanks for your help!

Bernard said...


I think you need to engage this nurse and understand why she thinks that 504 plans are a bad idea for folks with Type 1 diabetes. I know this will be hard, but I'll bet if you can change her mind all the rest will be a lot easier.

If you find out what her opposition is she may turn from being an opponent to being a fierce supporter.

I hope that you succeed in your fight. For some reason, your struggle is making me wonder whether refluxguy isn't right about Type 1 becoming invisible. I think we all do such a good job of managing/hiding our diabetes that people don't realize just what's needed sometimes.

MileMasterSarah said...

PACER should be able to help you too, Sandra. 1-800-537-2237.

Knowing the law is half the battle. Finding someone to help fight the battle with you is the other part of the battle.

When it comes right down to it, they will have to provide a 504, and if you have the right people there to help you, it will be much easier than if you do it alone!

I would wish you luck, but I don't really think you need it!

Major Bedhead said...

You can also contact Crystal Jackson at the ADA. If you're on the Children with Diabetes parents email list, you can contact Michelle Rago. I know she flew out to attend a 504 meeting for one of the women on the list, as a lawyer.

What a pain in the fucking ass. I'm glad you're fighting it, but good lord, they certainly are making it hard.

It's funny, when O was in 3rd grade, her teacher had type 1 and was not willing to give O even a modicum of help or encouragement and refused to hear that her diabetes could affect her ability to learn if she happened to be high or low. It pissed me right off.

Anonymous said...

What major life activities does this impact for Joseph? Sleeping. Eating. Physical activity. You could pull almost any entry off the blog here to demonstrate it! This unfortunately highlights their ignorance of diabetes, which makes the need for the document still stronger. The fact this would impact on his educational chances alone is discrimination directly due to his disability. I work around the UK law of disability discrimination, I don't know the US law, but you have the equivalent. Discrimination on grounds of disability is illegal, and if you are prepared to argue this on a legal footing, you will win. Wishing you the very best of luck.

Penny said...


I wish I could help, but I've never been through this. Riley will be going to private school and "by law" doesn't have to have a 504 or an IEP.

But, I met with his teacher yesterday and she seems that she will be very accomadating.

What in the heck is wrong with people? Type 1 can affect nearly every aspect of your life, eating, sleeping, walking....

I'm pullling for you. You shouldn't have to be fighting so hard.

Tara said...

Sandra - I usually lurk over here, but this issue really gets my dander up! I posted about the 504 issue on the ADA parents board and Bob put up some links to some good articles etc - you may have them already. The thread is called "504 crap again".

I don't understand why 504 coordinators think a student has to be doing poorly in school to qualify - a student with cystic fibrosis could be a straight A student, but they still need accomodations in order to have equal access to an education. Same with D!!

I think your school district picked the wrong person to "fight" with about this issue!

Anonymous said...

Sandra, since you called the ADA, I'm sure they already put you in touch with Crystal Jackson, who the ADA hired to help with school advocacy (she fought her school district, maybe even the whole State of Virginia and won). CJackson@diabetes_org, phone: 703-549-1500, Ext. 2108. If phone number has changed from two year's ago, call ADA. Schools are federally mandated to institute 504 Plans for students under the guidelines you stated "effecting a major life activity." School districts do not want to put through 504 Plans because they are legally bound to follow them and legally liable if they don't. Schools are always trying to foist off Individual Health Plans in lieu of 504 Plans. Under an Individual Health Plan, they are not legally bound. But they are required by Federal law to cover Type 1 diabetics under a 504 Plan. Interesting that your district is fighting the definition of Type 1 not "effecting a major life activity" -- I think you are in for a serious fight here. If I can find your email address, I will be glad to fax you what we needed to institute the 504 Plan for Erin. (1) Very strong letter of medical necessity and very clear guidelines covering everything needed as a medical order, right down to bathroom breaks and academic accomodations from her endocrinologist; (2) I downloaded the most nitpicky, stringent, demanding 504 Plan I could find. They did not give me all that I asked for, but since I asked for so much, I ended up getting more than what I needed; (3) My sister and I went to the meeting with a no-nonsense, rather aggressive manner and my sister did not back down from arguments. They could see if they did not agree they would have to fight her legally and they knew that legally they did not have a leg to stand on. I will email you as an attachment her current 504 Plan, which is a little bit more relaxed than our first 504. P.S. If the school agrees with and signs something in the 504 Plan, they are legally bound to follow it. Our school and most in Westchester county that I know of, refuses to sign that she can check blood sugar herself; she still has to go to the School Nurse to check BS. So I definitely did not get EVERYTHING I needed. My sister would have to take them to Court to get them to allow her to take BS in elementary school. She is saving that fight for the middle school. Good luck!!! You WILL win, you know..... No question.

Anonymous said...

Sandra, just received this email from ADA which might help. Found my academic accommodation letter from endo, but only have Adobe Reader on this computer. Will retype the whole letter into my next comment right here, if necessary:

"We have exciting news for all Diabetes Advocates about the American Diabetes Association's Safe at School Campaign!

Last spring, advocates like you voiced their concerns about the
American Nurses Association's (ANA) draft position statement
"School Nurses: Providing Safe Health Supervision and Care for
Children in the School Setting" because of its failure to
promote a system in which students with diabetes and other
disabilities could be medically safe at school and have access to the same educational opportunities as other students.

The American Diabetes Association, other disability organizations,
health care professionals, and parents concluded that ANA's draft
statement failed to recognize that, in addition to the vital role of
the school nurse, other school personnel (including teachers, coaches,administrators) are also essential in order to for children to obtain needed health care in school. We asked ANA to revise its
statement so that it not only advocated for more school nurses, but also urged school nurses to take advantage of their ability to train and supervise other school personnel in the tasks needed to assist students with a variety of medical conditions.

On March 16, 2007, ANA adopted a new position statement:
"Assuring Safe, High Quality Health Care in Pre-K through 12 Educational Settings." The major difference and significant
improvement over last year's draft statement is that the new statement
"supports a collaborative school health model" which "requires the cooperation and participation of health care professionals, teachers, school administrators and staff, students, families, and the community." The statement acknowledges the position previously taken by ANA with regard to students with diabetes as being too narrow. Rather, the new statement recognizes that in today's school environment a safe model of school health care delivery is one in which a school nurse may safely delegate care tasks to unlicensed personnel. Read the statement online at:
The Association views ANA's new position statement as an opportunity to work with professional nursing organizations, health care providers, disability groups, educators, parents, and other stakeholders to develop a strategy to ensure that the needs of students are safely and appropriately met.

We want to thank each and every advocate who contacted ANA about last year's draft statement. Your voices were heard and, because
of that, we are all much closer to the day when every child will be
safe at school.

You can continue to make a difference by sending an e-card to your friends and family and invite them to become a Diabetes Advocate too by clicking on the following link:
American Diabetes Association Action Center

Anonymous said...

Before we set up 504 Plan, first we got medical orders (which included the academic accommodations and everything we wanted done from the endo. Be patient... the most pertinent items are at the very end of the post. I have image only pdfs so I will have to type it. Here is her letter from the endo (I had two pages of medical orders re glucagon, etc. prior to this letter.) We did not want the aide the endo ordered: This was one month after diagnosis.
From: Mary Pat Gallagher, M.D.,Naomi Berrie Diabetes Center, New York, NY,
Re: Erin
Erin is an 8-year old female with Type 1 diabetes who is under my care for her diabetes. She has been under good diabetes control and her Glychemoglobin was 7.1% (normal 4-6%). She will receive insulin 3-4 times a day at all meals and snacks. Blood glucose monitoring should be done pre-breakfast, pre-lunch, pre-snack, pre-dinner, [before and after gym, before getting on school bus] [text in brackets added later] and occasionally if she does not feel well, extra blood glucose monitoring may be required. Erin requires a one to one school aide to be available to help the teacher and school nurse make sure she is safe and healthy. [We declined the aide]. In school the aide should make sure she gets her meals and snacks in a timely manner and that they are eaten. The aide can also alert the staff if she is having a low blood sugar and give appropriate treatment and help monitor her blood sugar. I am requesting that Erin receives a one to one school aide to assist her with monitoring her diabetes.
Our goal for Erin is to have blood sugars between 80-180 mg/dl 60%-70% of the time. [This has since changed to 80-120] Occasionally her blood sugar will be higher or lower, hypoglycemia <80 mg/dl needs to be treated in accordance with the guidelines listed in the attached "School Management on Diabetes" and made part of the student's Health Care Plan/Physician's Order. Erin usually feels cold with a low blood sugar but it may manifest itself in many ways including feeling tired, quiet, irritable, shaky or sweating.

[Here's the nitty-gritty]
Both hyperglycemia and hypoglycemia affect the student's ability to learn and we would like to keep Erin's blood sugars in the 80-180 mg/dl range for optimal learning and testing of academic skills. The student has a RECOGNIZED HANDICAP (emphasis mine), Type 1 Diabetes, which requires accommodations to ensure that she has the same opportunities and conditions for learning and academic testing as her classmates. This includes minimal disruption of her regular school schedule and minimal time away from the classroom. It should be noted that recent scientific studies have provided support showing that the failure to properly and promptly treat hyperglycemia and hypoglycemia may result in further deterioration of a child's ability to learn, decreased memory and retention as well as lead to potentially serious medical complications or fatality. Below are the academic related accommodations to be provided in accordance with the provisions of DIABETES RESOURCE MANUAL FOR SCHOOL PERSONNEL (ADA) and CLINIAL PRACTICE RECOMMENDATIONS 1999, CARE OF CHILDREN WITH DIABETES IN SCHOOL S94 (ADA January 1999 and THE INSULIN PUMP HANDBOOK (Minimed).

1. The student's teacher and all staff members providing instruction to her shall be trained in the recognition and treatment of hypoglycemia and hyperglycemia.
2. The student's teacher will work with the student and her parents to coordinate a meal and snack schedule that will coincide with the schedule of her classmates to the closest extent possible. The teacher will notify the parents at least 48 hours in advance of any expected changes that may affect the student's meals and snack times or exercise routine.
3. The teacher will permit the student to eat a snack in the classroom or anywhere on the school grounds at a time designated by the student's parents and to treat hypoglycemia.
4. The student shall have immediate availability and access to treatment of hypoglycemia without the necessity for her to be without direct supervision by a knowledgeable adult and without the necessity for him to travel to the health clinic.
5.The student shall be permitted to carry on her person at all times glucose tabs, glucose gel, glucagon, insulin, snack and glucometer and incidental supplies (the school will not allow the glucagon or for Erin to carry a glucometer and did not sign. Glucagon by teacher's desk)
6. A snack box and glucometer and incidental supplies shall be maintained in the student's classroom and she should have access to it for both routine testing and testing for hypoglycemia and hyperglycemia (School will not allow glucometer to be used outside nurse's office)
7.The student's diabetic supplies and snacks, including insulin and glucagons are also to be maintained in the clinic, but need to travel with the student on field trips or to other off-site events. (we have to go on field trips)
8. The student shall be permitted to use the bathroom and water fountain as needed and upon request.
9. the student shall be permitted to participate fully in all extracurricular activities, including sports, field trips, enrichment programs, with the access to the health accommodations contained in his Health Care Plan. (School will not provide this, we must be there)
10. A trained teacher or other designated trained staff shall accompany the student on field trips and provide accommodations in accordance with these provisions. The student's diabetic supplies and snacks must travel with the student during off-site activities such as field trips. (school would not agree. We must go)
11. The student shall be permitted to take exams and other academic tests at other times, if she is affected by high or low blood glucose levels at the time of regular testing. The student shall be permitted to have extra time to do her classroom work if he is affected by high or low blood glucose levels.
12. The student will have access to snacks during testing to treat hypoglycemia without penalty.
13. The student will be permitted to have extended time on academic tests and breaks during the test to use the bathroom, get a drink or treat hypoglycemia without penalty.
14. Substitute teachers and substitute health aides need to be made aware of the student's diabetes and be prepared and capable of providing compliance with the provisions herein.
15. School staff members, the student's teacher and school administrators and other designated individuals must be provided with diabetes education and training prior to the beginning of each school year by a certified diabetes educator, pediatric endocrinologist and/or parent.
16. The student's bus driver shall be trained in the administration of glucagon, the recognition and treatment of both hypoglycemia and hyperglycemia. The student's diabetic supplies, including an edible snack, shall be kept on her person and the student shall not be prohibited from eating snack or otherwise treating a low blood sugar. [Good luck on this one. Driver will allow her to carry snacks in backpack. Nothing else. She has to be tested before getting on the bus.]
17. The student shall not be penalized for absences for required medical appointments and/or for illness.
18. The student shall have access to school medical personnel upon request.
19. The school shall maintain records of the student's blood glucose levels and treatments.
20. School must communicate with parents daily regarding the student's blood glucose levels and treatments.
21. A designated school staff member shall monitor the student's lunch table in order to access carbohydrate intake for pump/insulin injections users and allow adequate time for lunch by the student. {Not done. Goes to nurse to bolus/calculate, etc., then on to lunch}. If buying lunch at school, there is a stipulation she must absolutely go to the head of the line, as missing lunch is really not an option for these kids.
That is the end of our endo's letter. Very thorough, I think.
This letter was sent in attached to her medical orders (we presented it as part of her medical order). We then downloaded ADA Medical Management Plan, filled it out manually and attached it to the medial order letter and letter of school accomodations from the endo. I then typed up a "Diabetic Daily Care Plan" for the school nurse, detailing what she should be doing during Erin's day. Example, 10am. BS check; 12 noon: BS check; checking carbs and bolusing for lunch; 2:15 pm BS check before getting on the school bus. on gym days, BS before and after gym and disconnect pump. This is detailed. She then went to school with this. They convened the 504 within a month or so. Got a letter advising me when 504 would be convened, who would be present and an attached sheet of Erin's rights "SECTION 504 PROCEDURAL SAFEGUARDS" (I will type in next comment). You may bring ADA representatives and legal representation to the 504 meeting. I suggest, in your case, you do so.

Anonymous said...

After we handed in (1) the medical order letter from the endo, (2)the ENDO's letter of school accommodations/academic accommodations (this was drafted and signed by the endo, I did not create this); (3)downloaded ADA Medical Management plan, filled in by Erin's Mom (we now use our own), we requested the endo's orders be complied with by the school and a 504 Plan meeting. They then tried to talk us out of this, saying it wasn't necessary. My sister demanded a formal 504 meeting. She then got a letter from the Director of Special Education and Instructional Services informing her of when the Section 504 Committee would meet to discuss Erin's case and inviting her to attend. "The Section 504 Committee is scheduled to meet to review your child's educational services. You are cordially invited to attend to meet with us to actively participate as a member of the Committee and discuss any information about your child you feel is relevant with respect to the identification, evaluation and educational placement of your child. You may be accompanied to this meeting by anyone of your choosing who has knowledge or special expertise about your child, including educational personnel..." [If I were you, I would bring ADA Rep, JDRF Rep and if you have legal help, bring the lawyer to the meeting]. "...You may also submit evaluation information that will be considered by the Committee...
The Committee is composed of 'people knowledgeable about the evaluative information being reviewed and the educational options available'." [False!]

Encl. Section 504 Procedural Safeguards Notices [TO COME IN NEXT COMMENT]

Anonymous said...

This attachment was sent, along with the letter informing us when the 504 Plan Committee would convene, explaining your legal rights.

The parents or guardian shall be notified in writing of all Child Study Team (CST) decisions concerning the identification, evaluation or educational placement of students.
The parents or guardian shall be notified that they may examine relevant records.
As to such decisions by the CST, the parents or guardian shall have the right to an impartial hearing with opportunity for participation by the parents or guardian and their counsel. In the notification of any CST decision concerning identification, evaluation or placement, the parents or guardian will be advised that:
o A request for a Section 504 due process hearing should be made within thirty-five days of notice of the right to file (but not less than 30 days)
o A request shall be made to: _______, Director of Special Education and Instructional Services, _____ School District, City, State.
o The hearing will be held in accordance with Regulation IGBA-R(2). The decision may be appealed only to a federal court of competent jurisdiction.
o Attorney's fees are available only as authorized by law.
o If a state due process hearing has been or will be held under the Individuals with Disabilities Education Act (IDEA) concerning issues relevant to the Section 504 proceeding, a hearing officer qualified as to IDEA and Section 504 proceedings may preside in a joint hearing. The issues for either IDEA or Section 504 determination shall be clearly defined at the outset and determinations by the hearing officer will be separate and distinct.
If both the parents or guardian and the Committee on Special Education agrees that the student is not eligible for special education under IDEA, neither party is required to exhaust administrative proceedings under the IDEA prior to the holding of a Section 504 due process hearing.
The hearing officer shall render a decision. The parents or guardian shall be notified in writing of the decision. Either party may seek review of the decision of the Section 504 hearing officer by a federal court of competent jurisdiction.
The parties shall abide by the decision of the Section 504 hearing officer unless the decision is appealed to a federal court of competent jurisdiction and the decision is stayed by the Court.

IF YOU CAN BRING ADA REPRESENTATIVE AND/OR LEGAL REPRESENTATIVE, DO IT. When we walked into the 504 Committee meeting, there were eight or nine people, Superintendant of school district, Principal, School Nurse (they will be using HER as their medical expert), you may want your Endo's nurse there if you can possibly get her to counteract the nurse they have, school psychologist, her teacher, Director of nursing services for the schools -- There were eight of them and two of us. Be prepared with written and typed documentation, have your endo's orders, 504 Plan DRAFT typed up, etc.

Anonymous said...

Sandra, be careful what you ask for! LOL. I have no other way of getting in touch with you and your 504 Meeting is scheduled shortly, so forgive me.....
We were extremely well prepared at the meeting because I had manila folders with xeroxed information for eight of the parties. I had the letter of school and academic accommodations from the endo I typed for you on previous comment. I had a letter from the NYS Board of Ed supporting First Responders be trained in Glucagon administration by the School Nurse (we did not get that approved until this year). I had her medical orders. I had a very nit-picky 504 Plan typed up that I had copied from someone on the net, 8 pages long, and making Erin a full time job. Erin's mother is a fighter. We did not get everything we asked for, but we got a lot of the things we asked for. We asked for more than we wanted; consequently we got most of what we wanted. You school district seems to be lightyears behind ours, so I would not go in alone. Get Endo Nurse CDE if you can, ADA, JDRF, legal, you are going to have to fight a different fight.
Student Name and contact info.

SPECIAL ALERTS: Type 1 Diabetes

Committee: Section 504 Committee
Decision: Section 504
Meeting Date:
REASON: Annual Review

LIMITED MAJOR LIFE ACTIVITY: The student continues to have unstable glucose, due to diabetes. When her blood glucose is not stable, for example, when she has dangerous drops or increases in blood sugar, her ability to function in the classroom may be impacted and her performance could be impaired.


PARTICIPATION IN STATE OR LOCAL ASSESSMENTS: The student will participate in the same state or local assessments that are administered to general education students.

PROGRAM/SERVICE: Skilled Nursing Services
RATIO: Individual

PROGRAMS/RELATED SERVICES NOTATION: Student will be provided with an Individual Health Plan, which can be amended at any time in response to Erin's current physical status, with approval of her mother and the school nurse. Staff volunteers will be offered training in giving a glucagon injection (THIS IS IMPORTANT TO PUT IN. OTHERWISE WHEN YOU WANT A CHANGE IN HIS ROUTINE NURSE COULD OBJECT)

PROGRAM MODIFICATIONS/ACCOMMODATIONS/SUPPLEMENTARY AIDS AND SERVICES: Specifications such as frequency, duration, location and initiation date are indicated, if appropriate. Otherwise, services are provided thoughout the student's educational program, as required.

Individual Health Plan
Erin may take breaks as needed to use the water fountain or bathroom, do a blood glucose test or receive treatment from the school nurse. She will be permitted to have extra time to finish classroom work or tests without penalty.

Additional set of books: Student misses school due to diabetes and may not have the books she needs at home to do her work.
Teacher will send her homework home with a neighbor.

TESTING ACCOMMODATIONS: Testing accommodations with any conditions or specifications will be used consistently in the student's educational program, and in the administration of District-wide and State assessments of student achievement, consistent with State Education Department's policy.

FLEXIBLE SCHEDULING: If Erin's blood sugar prior to taking standardized tests is too high or too low, she will be permitted to take the test at another time. She will also be allowed to take breaks as needed to use the water fountain or bathroom or to receive care by the school nurse.

FLEXIBLE SETTING: Erin needs this accommodation so that her needs for flexible scheduling can be met.

The student's teacher and all staff members providing instruction and supervision to her shall be trained in the recognition of hypoglycemia and hyperglycemia so that the school nurse can be immediately alerted if she begins to have symptoms of either hypoglycemia or hyperglycemia.
There are a few more minor entries that we do not use, such as Assistive Technology Devices but these are the parts of the 504 that pertain to her.
Hope you have an idea of what the process is all about.

Sandra Miller said...


Coming up for air to thank you for all of the terrific suggestions and support.

I've been buried in Section 504 documents, court cases, etc... for days.

Sleep has been choppy at best.


The details you're sharing here are awesome. This is exactly the kind of information I need-- thanks so much for taking the time to post it.

(Erin is very lucky to have such tremendous advocates in her mom and aunt!)

My email address is (feel free to email me directly with anything else you think might help).

Oh, and btw-- I left a phone message and sent an email to Crystal Jackson this morning. (Thanks also for giving me her contact info.)

You see, when I called the national ADA line last Tuesday, they wouldn't let me speak with an advocate without them first sending out a discrimination information packet (which I've yet to receive).

But then I contacted a friend (and the manager of) our local ADA office-- who put me in touch with a local advocate.

I'll keep you all posted on what happens...

Sarah_I said...

My daughter has had a 504 in place for years. He is continually challenged. What you need to know is that it is the law. To my knowledge a school cannot refuse a 504. If they violate the 504 they can be held liable. What you also need to know is that if your school is not copperative, there is a good chance they never will be. Know your rights. Inform them of your rights. Seek counsel if you need it and don not be intimidated. My daughter has passed through the same district all her school years and has constantly met with discrimination. You have to be ready to address the issue whenever it comes up, and in our case that was at least every year. She is graduating this year and one of her teachers threatened to fail her for no other reason than absenteeism. To my knowledge you can request a new 504 at any time and the school needs to comply by law. Best of luck.

Anonymous said...

I couldn't believe your post. I am going through the same fight right now with my school district for my 5 year old daughter entering first grade next Sept. diagnosed less than a year. I know what no sleep means. We have been denied for the same reasons basically being told that she "is not sick enough" What a slap in the face. They also told us that her pump mitigates her situation making her not entitled to a 504. I told them that insulin is not a cure. We have had one hearing and are awaiting another. They wanted more documentation of dangerous blood sugar incidences. We have retained a lawyer but he has stayed in the background right now because if we bring him in the district brings in their lawyer and nothing gets done. They need to know that we are not going away and will fight this until we get what we waNT. tHIS IS MY DAUGHTERS HEALTH AND EDUCATION. It is sad but nice to know that others have encountered the same resistance.

Sandra Miller said...


Thanks for chiming in.

So maddening that even with a 504 our kids are still vulnerable.


You're right-- it does help knowing we're not alone. But at the same time, I hate imagining others going through this...

Now, you said that the school claims your daughter's situation is mitigated by her pump.

Have you come across this?

If not, it's a "guidance" document on Sutton-- the Supreme Court decision that made "mitigating measures" a factor when determining ADA/504 eligibility.

I found this part particularly helpful:

"A mitigating measure is a device or practice that a student uses on his or her own to reduce or eliminate the effects of the student’s impairment. A mitigating measure is something a student can use without any action or assistance by the school."

When some action or permission on the part of the school would be required before a student could use a measure, the effects of the measure will not be considered as “mitigating” because the measure is effectively unavailable to the student unless the school takes some action.

Therefore, OCR will not consider the impact of reasonable modifications, academic adjustments, auxiliary aids and services, or related aids and services when evaluating whether a student’s impairment substantially limits a major life activity." [emphasis added]

In other words, the effects of your daughter's insulin pump cannot be taken into account in their evaluation for 504 eligibility unless she can use her pump independently-- without assistance, supervision, or permission from the school.

Good luck-- and if you want to talk more about any of this, feel free to comment here or email me directly at:

Anonymous said...

Just had to laugh about the pump being used as a reason to deny a 504 Plan... At our 504, the school psychologist, upon noting the constant adjustments being done by the nurse, innocently asked "But doesn't the pump take care of this?" To which the response was: The pump is an insulin delivery device. That is all. Most people assume the pump is an artificial pancreas and controls glucose automatically, LOL. Soon.. Soon... P.S. Re: absenteeism, be sure to put a clause into your 504 regarding this. School will challenge absences even so.

Anonymous said...

Sandra, you have a LOT of mail at If you download the documents, it may save you time to focus on the more important legal research.

Anonymous said...

a lot of information re: discrimination and diabetes in the schools can be found at:

Tamara said...

Hi Sandra, My name is Tami Gamble I am an advocate with the ADA. Carol forwarded your link to me. You need to go after the major life function issue using the following tools: There is something called the RAPP article that explains mitigating measures to back up what I am about to tell you. When determining if a major life function is affected you must consider the mitigating measure being used and whether or not there is a negetive affect from the measure being used. For example: a person wearing glasses would never qualify for a 504 because even though they can't see well with out them there is not a negative affect from wearing them, they indeed cure the physical deficit so no accomodations for this person are needed. The eye glasses are the mitigating measure. When someone is receiving insulin for treatment there are negative affects for example highs and lows. They need assistance with these highs and lows and cognition is affected with highs and lows. If a person becomes unconcious, extremely high or low, they cannot walk, eat, care for one's self. Without the mitigating measure the person will die so that is not an option either. Also metabolizing food is affected. Metabolizing food is a major life function. For a person with type 1 diabetes they absolutely need accomodations and assistance. First I might say that a 504 is not based on accademic criteria, there will be academic accomodations when the child is suffering from a high or a low or missed school due to this disease but the qualifications have nothing to do with how the child is preforming in school. The IEP is used for academic issues and falls under IDEA. The 504 falls under the american disabilities act and is based on the childs diagnosis. Another document that you want is the OCR document on hidden disabilities which specifically addresses disease including the endocrine system and diabetes and qualifying for the 504. They tried to disqualify my son based on the fact that he is a brilliant child. I went in with mitigating measures and the documents that I mentioned as well as the one's that you have and he was qualified. There is another issue of the school having to be involved, they must be for your child to have a safe place to learn and for him to benefit in the same way the other students do from receiving FAPE. In order for him to receive FAPE he must have related aids and services which the school must provide, this also relates to your child qualifying for a 504. Wisconsin has wonderful laws on diabetes in school. In fact they have adopted the ADA's possition "Helping the Student with Diabetes Succeed, A Guide for School Personnel." The OCR has made rulings in the past that schools must at the very least meet the criteria for the same guide. You can do this, you can get this, it's just going to take some more time. It took me nine months and I absolutely knew what I was doing and was relentless about the whole thing. It's disenheartening I know but hang tough. The ANA supports the practices of the ADA now. They just released a statement a few weeks ago. Go to their link and you will find how they support the whole staff being involved. If you have to take on the school nurse you can still win. Don't worry. Show the school the document, show her the document. Ask them why they would want to deny your child life saving treatment and immediate treatment. It's denial of care and life threatening. They will have no answer for this. If they do, have them put it in writting. It worked for us. Also, type up your own 504, have your childs endo sign that he is in agreement and fully supports the accomodations. Get a letter from your endo that you are knowledgeable about your childs care etc and have the authority to delegate, change insulin levels, ie: insulin to carb ratio's, basals etc. This nurse will want to take the lead. Make sure that you work with her but this document will keep you in charge of what happens with your son. Also getting something written in the 504 that your child and health care aid can be given verbal instructions over the phone for changes in treatment is very very important. I am sorry that this is happening to you. Don't give up. I hope this information was helpful to you.

Tamara Gamble

josiejean said...

sandra-i'm new to your blog and thought i would say hello. my son was diagnosed 1/17/05. we too live in Wi. are you in mke? we're currently researching pumps for ethan (3.5 yrs) and wondered if you have any favorites. love you blog and all the other blogs that you have linked to yours. i have one but it isn't all about D. ericjosie.blogspot. please email when you have time thanks, josie

Anonymous said...

Please check out this link from the USDA website. I am going through the 504 process for my daughters PRIVATE school...a battle indeed! But they only get funding from the USDA not the Dept of ED. But nonetheless, the school must comply with antidiscrimination laws. I have been on the USDA site alot lately and you may absolutely love what you read from that link. There is a 504 dietary plan for diabetic kids there. Obviously, the USDA sees diabetes as a 504 qualified disabilty.

Hope you have better luck with your school soon...

Anonymous said...

Also, here is the guidance from the USDA about accomodating kids with special dietary needs.

Utilizing the USDA is another great angle for you.