School-504 plan- Advice?

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emmac13

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Hello. My son Eddie was recently diagnosed with Crohn's. We let the teachers and asst. principle know this. For the first two semesters of 8th grade he had the highest GPA in his class. He is in 10th grade math and his grades are important to him. Recently with this medical testing he is having difficulty at school because of missing class. Most of the teachers have been understanding. Of course there has to be that one teacher. And it happens to be his art teacher not giving him time missed. Needless to say we emailed the asst. principle of the issue and mentioned meeting with them about going over a 504. My wife received a voicemail saying the school counselor wanted to meet with us and was a 504 necessary. I feel it is as he is already having issues with a teacher. Plus you never know what the future holds for Eddie or the school district. Please help with your thoughts, experiences, and knowledge. Thank you all.
 
I feel with a chronic illness a 504 is definitely needed. Like you said, you don't know what the future holds or the personality/flexibility of every teacher.

My son was at a military prep school when dx'ed and I feel the 504 was a great implement for him. The course study was rigorous and tardiness and absences could detrimentally affect his GPA. We eventually made the decision to move him to a flex school because the physical demands of the military aspects were just too much when he was flaring.

Setting up the 504 was fairly easy and I made sure to make copies of everything, the GI letter, correspondance emails before/after the 504 meeting and of course, the allowances. Also the 504 needs to be filed with Collegeboard for allowances during standardized testing, SAT, ACT etc.

The CCFA, I believe, has a great template for 504 allowances concerning Crohns.
 
Thank you. I printed that out. It seems the message my wife got was from the counselor. I just received an email from the assistant principle that was very positive stating she told the counselor to draft a 504 that we will sit down and go over and revise. I am thinking the counselor is just being lazy this Friday.
 
We recently added a 504 for my daughter. The process was pretty simple. Our district has a form that our GI needed to fill out. Basically he needed to state the diagnosis, list medications, and discuss how the disease affects my daughter. He was more than willing to do that for us. I then turned that form in to my child's teacher and emailed her (so it would be in writing) that I wanted a 504 plan for my daughter. She forwarded that email to the ESE coordinator and a date was set for the meeting. At the beginning of the meeting we discussed my daughter, her academic performance, and her educational needs and eligibility was determined. The entire meeting lasted maybe 20 minutes and we wrote a plan tailored for my daughter and possible accommodations she may require.

If you think your son would benefit from a 504 plan (and he likely would) then be persistent and don't take "no" for an answer. If he has a diagnosis then he has the right to have accommodations to help him be successful.
 
Also, the 504 can be a lot of work for the school that does not get supplemented like IEP does so you can run into stubborn admins, just keep pushing if that happens. It is good to hear the asst. principal seems to be positive about it. Our curriculum director was phenomenal about it and would always help out if a teacher was balking or not following allowances. It is great to have an admin ally/advocate on your side.
 
We had the opposite experience when we had Jack's done in 5th grade the principal didn't think it was necessary and the counselor told her it was. In our district the counselors are
the 504 coordinators.
Remember it can always be adjusted to add more things if needed which we had to do with Jack in 8th grade.
Some ideas:
No tardies - Jack would have had 28 tardies in the first couple of months of school if not for 504.
Extended time for make up work, can be anywhere from 10 days to at one point Jack had that it needed to be turned the week before final testing. This was a great help especially if you are dealing with fatigue in order to not only do the current homework but get caught up when you are talking about 7 different classes it adds up to a lot of work.
We have what we call the meat and not the potatoes so in certain classes he only had to do the big assignments and not all the busy work or even in math he only had to do enough problems to show understanding so for example instead of 25 problems he would do 5.
It seems there is that one teacher every year that we have really had to explain or send an email referencing his 504 they just don't get it.
Here is a video we have shown to his educators, it is done by Seattle Children's Hospital and is geared towards educators:
http://www.youtube.com/watch?v=mLyeDubgm9U
 
We did our 504 a few weeks ago. The school was very accommodating, but neither the Counselor or Asst. Principal had dealt with a child with Crohn's before. We spent most of the meeting explaining the disease. They had told me the nurse would be at our meeting, but the Counselor never told the nurse -- urgh! I had to meet with the nurse separately, but she was very familiar with the disease and most helpful. (Ask for the Nurse to be included!!!). My daughter is in 4th grade and is extremely advanced, so I am not worried about coursework this year. However, I am worried about middle school. I do hear that they are less flexible. I am hoping with things in place in elementary, it will help moving forward.

Anyway...for us, we made sure our daughter could go to the bathroom anytime without asking. Also, during state testing, only one child in the room can use the restroom at a time and the restrooms are guarded by another teacher to only allow 1 child in the restroom at a time. The counselor made my dd her own bathroom pass for testing days. This pass allows her to move to the front of the line. She is also allowed to use the nurse's bathroom any time she wants. They said having the 504 in place would be a strong basis for her if she has to go before the truancy committee (missed too many days, too many tardies). I do think when we get to middle school, we will need to add something about missed work, etc.
 
Yes he should have a 504 plan. Just be aware that the 504 plan is only as good as the administrations willingness to back it up with recalcitrant teachers and to bend school rules about things like bathroom passes. To get it legally enforced you must sue in federal court.

The alternative is an IEP which doesn't sound like it applies in your case. For children who chronically miss school or need a shortened school day or home hospital on a regular basis, and IEP is a necessity. My son recently missed 8 weeks of school due to Crohn's flare followed by Pancreatitis. Without his IEP I don't know that he would be graduating at the end of the year.
 
I'm a big fan of the 504. When we did ours, I was advised to set it up thinking worst case scenario, so when the worst case scenario happens, everything is in place. Being newly diagnosed, that might be hard to imagine. I'd highly recommend following, within reason, the CCFA template that was posted above.

A couple of things we included that were not in the template were allowing DS to wipe down his desks in each classroom with Chlorox wipes (some parents in our district are against this), his own dedicated keyboard in the library to avoid germs, and a locker as close to a bathroom as possible so he doesn't have to fight the crowds in between classes.

On a non-504 note, another thing we've found very helpful is that DS has a Medic Alert bracelet that he wears every day. During times when he's had to use the bathroom a lot, he would catch the teachers eye as he was walking out and just tap his bracelet. It was secret code for I gotta go or I'm going to the nurse. It has worked really well because he's not interrupting class or drawing attention to himself, yet still communicating with his teachers so they don't worry about him.

504's (should) apply to all district sponsored sports or activities too.
 
Your son definitely needs a 504 plan put in place and the sooner the better. The 504 plan not only helps with accommodations in high school but also helps set up accommodations a he heads to college as well.
As you try to figure out his accommodations show your son the CCFA template and let him assist in writing it. He is old enough to figure out what he needs and will be able to add if something is missing. I have three kids with crohns and each one of them helped to complete their 504 plan. To me, it gave them ownership of their plan and they had a better understanding of the help available to them.
Couple things we had in ours besides the obvious are: extra set of books at home, so when they are absent several days the books were already there, tardies to school (cause mornings are so hard on my older daughter ), and spreading put of tests and homework due to the extreme fatigue. Allow for creatively to come up with all accommodations.
 
^^^ Yes Jack always attends the 504 meeting. Had a counselor tell me how great she thought that was. He was the one who spoke and said what he needed but this was last year in 8th grade after attending since 5th grade. She thought it was fantastic he was advocating for himself. I figure this is something he needs to learn because no matter what I want I will not always be there nor will he want me to be
 
We also have a 504 plan. At the time, I didn't feel it necessary since our admin was fabulous about the issues- tardy, absences, etc. But my friend is a high school principal and pushed the issue. Now, we have a new principal who is strict about missed days and it has already proven to be invaluable.

We also include- access to cell phone during day, more time for projects during flares, and ability to leave classroom without permission for emergencies.

I've never had my son attend the 504 meeting will have to consider that for the future
 
emmac13 said:
Hello. My son Eddie was recently diagnosed with Crohn's. We let the teachers and asst. principle know this. For the first two semesters of 8th grade he had the highest GPA in his class. He is in 10th grade math and his grades are important to him. Recently with this medical testing he is having difficulty at school because of missing class. Most of the teachers have been understanding. Of course there has to be that one teacher. And it happens to be his art teacher not giving him time missed. Needless to say we emailed the asst. principle of the issue and mentioned meeting with them about going over a 504. My wife received a voicemail saying the school counselor wanted to meet with us and was a 504 necessary. I feel it is as he is already having issues with a teacher. Plus you never know what the future holds for Eddie or the school district. Please help with your thoughts, experiences, and knowledge. Thank you all.
Click to expand...

Disclaimer.. I don't know the rules of your state but IDEA (Individuals with Disability Act) affords students and parents specific rights. First, I would push for an IEP - Individualized Education Plan - and not a 504 Plan. A 504 plan is almost like an "improvement plan" for children with specific needs. Your son Eddie is bright, but suffers from severe health issues. A 504 doesn't afford the same protections as an IEP.

IEP gives you solid footing if the school refuses to provide proper accommodations.

1) Home instruction (sending a teacher to the house) if Eddie misses X amount of days.

2) Extended timeframes and specific accommodations

3) Ability to light a fire under the school and complain to the state if the IEP isn't followed.

My mother's was special education teacher and I was also a licensed teacher before getting severely sick. Hope my advice helps.
 
Justin, a child may not qualify for an IEP simply because they have IBD. If the disease is not impacting their academic performance and grades, special education services really aren't necessary. Accommodations can be given under a 504 and that is a legally binding document.
 
DanceMom said:
Justin, a child may not qualify for an IEP simply because they have IBD. If the disease is not impacting their academic performance and grades, special education services really aren't necessary. Accommodations can be given under a 504 and that is a legally binding document.
Click to expand...

http://www.ncld.org/disability-advo...section-504/section-504-idea-comparison-chart

The benefit of an IEP is the federal statute under IDEA (Individuals with Disabilities Act). Schools are bound by federal law where as a 504 is a lot less restrictive.

An IEP sets measureable goals, strict guidelines, review timetables, etc.

IDEA specifically dictates that IEP's have a section for Other Health Impairments. If Eddie is missing numerous days, then his academic well being is suffering. He is falling behind his peers due to an ongoing medical condition.

Please read here: http://nichcy.org/disability/specific/ohi
Definition of OHI.
Note: Is due to chronic or acute health problems

Unfortunately, many parents don't know their rights and schools aren't always willing to share these rights. Long story short, children with ongoing medical conditions where the prognosis is unlikely to improve CAN AND ARE OFTEN eligible.

Hope this helps someone. Free advice for the day. No charge!
 
I'm not here to debate Justin, just provide facts. I'm an ESE Teacher...I write IEPs every single week. In order to qualify for an IEP a student must be between the ages of 3-21 and have an identified disability that impedes learning to the point that the child needs specialized instruction. Not all IBD kids meet the eligibility requirements. My daughter certainly doesn't. She is an honor roll student, despite missing over 20 days of school this year. She made nearly perfect scores on her state tests last year. The data (grades, test scores, etc.) doesn't support an IEP in her case (and that's likely true for many other IBD kids as well). My daughter performs at or above grade level so no annual goals need to be written for her - which is what IEPs are for. If you read your comparison chart you'll see that the major difference in an IEP and a 504 is that for a child to qualify for an IEP they must need that IEP in order to successfully access the general education classroom. If they are already doing so (making honor roll, passing state/district tests) they don't qualify for an IEP but can still get a 504 with a documented disability.

Seriously don't want to debate, just want to make things clear. I'm new to the IBD world but have been writing IEPs for quite some time.
 
:poo:
DanceMom said:
I'm not here to debate Justin, just provide facts. I'm an ESE Teacher...I write IEPs every single week. In order to qualify for an IEP a student must be between the ages of 3-21 and have an identified disability that impedes learning to the point that the child needs specialized instruction. Not all IBD kids meet the eligibility requirements. My daughter certainly doesn't. She is an honor roll student, despite missing over 20 days of school this year. She made nearly perfect scores on her state tests last year. The data (grades, test scores, etc.) doesn't support an IEP in her case (and that's likely true for many other IBD kids as well). My daughter performs at or above grade level so no annual goals need to be written for her - which is what IEPs are for. If you read your comparison chart you'll see that the major difference in an IEP and a 504 is that for a child to qualify for an IEP they must need that IEP in order to successfully access the general education classroom. If they are already doing so (making honor roll, passing state/district tests) they don't qualify for an IEP but can still get a 504 with a documented disability.

Seriously don't want to debate, just want to make things clear. I'm new to the IBD world but have been writing IEPs for quite some time.
Click to expand...

Not debating here. Just pointing out the guidelines and that some states might fight harder than others.

FYI, My mom taught special education & wrote IEPS over 20+ years. I also studied to teach and worked in schools, before becoming very ill.

The impedance to your daughter obtaining an IEP is the lack of absences and academic excellence (Congrats on Honor Roll).

Students missing school long term, having consecutive absences, and falling behind academically due to OHI are better aligned to receive an IEP. Does that mean children falling outside that criteria receive an automatic denial? No.

Every child is different, along with the willingness of each state, and school system.

If and when an IEP is possible, it's far superior to the 504. Think we agree there.
 
Here is a great article, "Key Differences Between Section 504, the ADA, and the IDEA".

http://www.wrightslaw.com/info/sec504.summ.rights.htm

And for preparing for college: "Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities"

http://www2.ed.gov/about/offices/list/ocr/transition.html

I regularly work in College/University settings with ADA Coordinators - each one has STRONGLY recommended getting your child on a 504 Plan as this will be extremely helpful when moving into the post secondary education. Hence if you only have your child on an IEP - it would behoove you to have a 504 Plan also established.

My son has been on a 504 Plan for the last 4 years. Though not initially easy to get established, having the 504 Plan in place has truly been a blessing for him/us.

Good luck in setting up yours. I always encourage parents to put EVERYTHING you could possible need into your plans, as getting everyone back together to make changes can be a hassle pending your district and how they run things.
 
Mehita, that "code" your son has with the teachers is a brilliant idea!

So far my daughter has not needed any accommodations, except that I contacted her teachers to see if she could be exempted from any non-essential homework assignments. Knowing she is a stellar student, several agreed and that has helped, though she usually does all the homework anyway.

I am inspired by this thread, though, and now realize it would be helpful to have a 504 in place since it is likely to be needed at some point. I found the online template. Thanks everyone for helping educate me.
 
I wish we had something like your 504 plan in the UK. There doesn't seem to be anything here which is similar.
Josh has a "care plan" at school, which means the teachers are aware he has crohns [ if they decide to read it ]. He is allowed a toilet pass, which allows him to use the staff toilet if necessary.
What it doesn't do is to allow for absences. Last year when he flared badly his absence was below 80%. Here they don't like it to go under 95%. So every time he was off due to his crohns, hospital appointments etc, he is marked as absence, records which follow him through school. Even just having a morning off for a blood test is an absence mark.
He also doesn't get any preferrential treatment for homework etc. It doesn't matter how bad he is feeling, it has to be done or he loses marks at school! His illness isn't taken into consideration at all.

I did send in a "snotty" letter to his PE teacher last year as on his report he said that Josh lack motivation in lesson, and needed to get his fitness levels up! I replied that if he had bothered to read Josh's care plan then he would have known he has crohns disease, which badly impacts his energy levels. I also stated that if he would like to discuss and be better informed of crohns disease, then contact me to discuss it. Surprisingly he never did contact me again. He now allows Josh time in the lesson for time out if needed.

My major worry at the moment is that Josh will go to high school in September, a far bigger school than he is currently at. I really don't know how all the teachers will handle things with Josh having to take time off.

One proud mum moment though is that Josh has been put onto the gifted and talented register at school as he has achieved over and above others the same age :) So all those absences haven't impacted him that much :)
 
Thanks champsmom, I will take a look at the info.
Dusty I already have the guide, but to be honest the schools don't really take a lot of notice of it. I gave them out to the head and Josh's registration teacher, but they just gave it a token glance. Because Josh is high achieving and causes no problems in school they seem to think that he is okay.
I am going to get very pro active for when he starts high school.
 
My kids school was very on board with the kids and I never had any problem with them. I handed out the equivalent publication from Crohn’s and Colitis Australia and kept the school fully informed of what was happening. I thought they ‘got it’ but you know what? They didn’t.

Like I say they did everything they could for the kids, every concession conceivable but when it really came down to it they just didn’t understand. I ended up having a meeting with the Principal, Deputy Principal, Councellor and every teacher that Sarah had. I told the Principal that I would conduct the meeting and I handed out the following report (link to the post below) to everyone present. Each section I discussed at length and at the finish of each I asked if there was any questions and then continued on. You will see Discussion Points at the end, these were what I identified as the key issues to be addressed and again on completion I opened the meeting up to questions again.

It was the best thing I ever did and remember that was coming from a school from which I had no problems!

http://www.crohnsforum.com/showpost.php?p=382603&postcount=13

Dusty. xxx
 
CDJ I have been preparing for the transition to high school for D too. She has been fortunate to be in the same school all of her life with administration that get it and support it. I expect the transition won't go as smoothly.

Like the UK we don't have the 504 here in Canada, but Crohns falls under the disability act that give her certain accommodations. I have an appointment with her current school principal to determine what is in her official school record that will travel to her new school and what is not so I can be proactive in her change of schools come september. I know the transition was hard on my oldest and she didn't have the added complication of crohns. I expect a tough time for the first half of the year, but hope this will minimize it somewhat.

Thanks Dusty for the guide. I have been combining Canada, US & now UK documents to start the education process of the high school.
 
Dusty, thank you for that. I am very impressed by what you have said in it. Do you mind if I copy and paste some of your points, and use Josh's name on it?
 
Just an update, I have sat down with D's current principal regarding her record and ensuring a smooth transition into high school. I am very glad I started this now with someone I know as there are a lot of accommodations they are able to make for her including possible transportation! I will let you know how it all goes! I thought I would just have to fight for absences and tardies... feeling positive
 
My wife pointed out there is another "thing" called an OHI (other health impairment). She said sometimes ADHD falls into that category. I am not sure where that differs from a 504.
 
We meet with the doctor then with the school later. Still waiting for pre cert for Remicade treatment. It has been 3 weeks. But unfortunately a service rep did not do their job the first time I called three weeks ago. So it has actually been 2 weeks because I called to check on it two weeks ago and it was not in the system. That's when I service rep we have dealt with before did put it into the system. So we are waiting and today I will tell the doctor how the first service rep cost us a week.
 

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