What's in your 504 Plan?

[Mehita]

We created DS's 504 plan before he ever had a Crohn's flare up. It mostly stemmed from having Celiac disease and the Crohn's was secondary at the time. All it officially says in his plan is that food service should work with me on lunches (epic fail, btw!), DS should be allowed lenient bathroom use, and everything in his Health Care Plan in the nurse's office should be followed. His health care plan is rather vague because the nurse has this thing about HCP's being longer than one page.

I'm wondering what you all have listed in your 504's and also if I should be detailing his accommodations in the 504 versus referring to his HCP.

Thoughts and suggestions?

 

[ChampsMom]

I used the 504 plan from the CCFA website and edited to what my son needed. I leaned towards the worst case scenario side on his needs so there was no confusion that he was a kid that was sick and would need what he needed when he needed it.

Most people won't look for another document to find out what is needed - so put everything in his 504 plan that is in his HCP. Once you have a 504 plan filed (on the record) it is a legal binding document.

 

[crohnsinct]

O got the whole enchilda.

- Unlimited bathroom access with no need to raise hand /get pass etc.
- Seating near the door if flaring.
- May move seat if a student near her is visably sick (her teachers have actually moved her numerous times)
- allowed a water bottle in class (typically banned cuz some kid snuck in gin...no not my kid!)
- self monitor work load and given extra time to finish assignments if needed
- stop the clock testing for bathroom usage
- self monitor for gym participation / but may not participate in sports practice if sat out of gym that day
- not penalized for sport game/meet participation due to absence the practice before a game IF absence is due to dr appointment, testing etc...I don't feel well/flare absence then not allowed to compete.
- no absence penalities
- homebound tutor in accordance to district policy for all other students
- a duplicate set of textbooks at home

Mind you, she has not taken advantage of one of these items. They all stayed in for her move to high school.

 

[AZMOM]

YES TO THE 504!!!!!!!!

We have:

Excused absences
2 days for each missed day to make up work
Adult scribe or computer use if needed (this is for the arthritis in her hands though)
Self excuse to bathroom - unlimited visit
Keeps snacks at school if needed
Can bring drink to class
Self monitors PE participation

I'm a huge advocate of the 504. Protects the kids the day you get that one teacher........

J.

 

[Jmrogers4]

- allowed a water bottle in class (typically banned cuz some kid snuck in gin...no not my kid!)

Same thing happened at Jack's school.
We are pretty much the same as O we also have no penalty for late assignments, has to have all assignments turned by week before finals each semester
Teacher may waive or shorten assignments as appropriate (instead of 2 math worksheets on same subject he may get one and we can sign off after a couple of problems done if we feel he understands the concept.)
These were mostly put in to deal with the fatigue he felt especially after a flare and just going back to school. We kept finding him asleep at his desk in the middle of doing homework

 

[Mehita]

Thanks, guys. Just to confirm, you have all of this in the actual 504? Our 504 says to refer to his health care plan, but I'm concerned that because it's not all spelled out in the actual 504 itself, that it may not be legally binding. Does that make sense?

 

[Josephine]

Just wondering if anything like 504 in the UK? and if so does the child have to legit medical condition to have one?

 

[ChampsMom]

With the way that HIPAA Laws are written, I would be extremely concerned about who would have a legal right to view his HCP. A 504 Plan is accessible by the Administration, Counselors, Nurses, 504 Staff and any other person you mention (meaning, you can list individuals who can have access to copies and/or you can personally make copies and ensure EACH teacher gets one).

I truly believe that it is empowering to our kids to know that the law stands behind them when it comes to their disease (at least this law....)

I have worked in the disability field my entire adult life - and realistically it is sad that we need laws to level a playing field that should automatically be leveled for anyone to "play" on it. But when the powers that be, choose the wrong and not the right - I love the fact my son can stand up and say, "You should do this, because it is the right thing to do... But in case you don't... It's also the law."

Teach them young - you have the right to be educated in an environment that meets your needs.

(Sorry... very passionate about this one...)

 

[Jmrogers4]

I would have it spelled out in his 504. Although it certainly wouldn't hurt to have it in both places. Personally we have to call/make arrangement every year with Jacks health plan, but with the 504 legally needs to be reviewed yearly which gives us a chance to meet with his teachers and basically open the lines of communication for the coming year

 

[my little penguin]

We are working out our 504 again - new school
So yes spell out as much as possible in the 504
Since ihp are written by individual nurses.

 

[crohnsinct]

504! Legally binding document.

The way it was explained to me: The 504 lists the accomodations that need to be made in light of the child's disability (IBD). A 504 adresses the child's needs from an educational standpoint.

A Health Care Plan is more a plan of action should a medical need arise. A Health Care Plan addresses the child's need from a health care perspective.

Either way call them what you want...504 is a legally binding document and the one teachers, counselors, coaches etc are familiar with and won't fool with.

 

[Maree.]

I don't know if UK has a 504 Plan equivalent but like US it does have legislation that requires schools to provide accomodations for children with special needs.

Here is a link to a document on Crohn's Disease & education in UK, which talks about legal rights and accomodations schools should consider, which mentions involving the school SENCO coordinator.
http://www.nacc.org.uk/downloads/factsheets/TeachersCanHelp.pdf

Here in UAE we have similar legislation but without a diagnosis we are a little in limbo land regarding the formalities, but with the support of a doctor (in our case the school doctor) we we're able to negotiate interim accomodations with the school to carry us over the diagnosis period.

 

[Hope345]

I am so glad I read through this thread. We are meeting with our daughters councelor today to talk about her 504 plan for her freshman year at high school in the fall. You all gave me several things to add to her plan. thank-you

 

[Mehita]

How did things go, Hope345?

I requested DS's 504 plan be reviewed a week ago. Attached a list of issues that have come up over the last two years and the CCFA sample plan adjusted for DS (thanks, ChampsMom!). Finally got a response back today. I'm on "the list" for July! Apparently our school district is revamping how they handle 504 plans (for the better from what I hear), but July? Really? As long as its done before school starts in September, it's ok, I guess.

Have you had to obtain doctor's letters? If so, for what?

 

[my little penguin]

YEs - you need an official letter signed from doc stating your child has IBD and that it is a medical disability.
It also helps if the doc spells out the accommodations they feel your child needs at school.
Most will review with you and choose from the ccfa template.
We also gave the new school the pamphlet from this link,
http://www.ccfa.org/assets/pdfs/teachers_guide_brochure_final.pdf
good luck

 

[ChampsMom]

Where I live, we have a special needs community associated with our Board of Education. It is inclusive of educators and parents to support the needs and education of parents/teachers of children with disabilities (in the US, most counties have these groups). The majority of the parents who participate/execute this group have children that fall under learning and developmentally delayed, autistic, etc. disabilities, however children's with Crohn's do fall under the category of students with special needs (to my knowledge I'm the only parent of a child with an IBD involved). What I have found is the parents in this program are EXPERTS on working in the school system as they have typically been dealing with the schools and the Board of Education in County since their child was diagnosed (typically during Infant/Toddler age).

Having said that... what we have found to be successful in our County (for IBD kids and for other kids with chronic disease and other 504 related needs) is to get the medical report (doctor's report) confirming that the child has "said" issue (this is a MUST). However at that point our doctors turn to the parents on what does the child truly need regarding accommodations. Doctors know medicine - parents know every day needs. (DISCLAIMER - there are always situations where what the child needs is medicine at school or medical attention during the day that would include the school nurse, then the doctor needs to give that information OR you are looking at having your county homeschool your child, which is our case now - and our Pediatrican not GI signs off on that form every 60 days, but I do the paperwork. The reason our Pediatrician signs off verse GI is because he/they know my son back to front and knows my family, has been his doctor his entire life. He is in support of what makes my son feel best verse what a system thinks is best for him.)

As a parent you know what your child needs (bathroom, food, stress minimizers, rest requirements, etc.) You watch them every day and typically know them best. You know that when they miss 2 days of school, that (pending what grade/level) it isn't possible for them to make up all of the work in 1 to 2 days because when they were at home they were *really* sick and returning to school is not like returning to school for a "all together healthy kid" who had the flu, cold or whatever; therefore he/she might need longer to make up work. Doctors do not know this information.

I would encourgage parents to get to know the parental groups in your area that support the needs of children with disabilities. All of their workshops will not apply to you (obviously) BUT their knowledge of the system, and the Go-to people has been invaluable to me for my children (I have an IBDer and my youngest is on the Autism Spectrum). I'm *so* very grateful to them!!

That was more wordy than I anticipated - sorry!

 

[Momnsyd]

Hello all , my daughter was diagnosed may 2012, I have been fighting with the school about how many absences she has had last school year she missed 31 days and was hospitalized to, this year she has missed 23 days. The counsler last school year had mentioned to me about the 504 plan and said after the summer break we would get that set up. Well when my daughter started school I had a meeting for her....they took her out of all her GT classes because of all her absences...she was so upset! And that counsler said the 504 plan didn't pertain to her! I am so frustrated...her GI doctor said it did pertain to her! And she would help me in every way she can...the nurse did have a pass for her in case she has to use the bathroom but when she has a sub ,that person would tell her she couldn't go! The school don't even communicate with each other...I had to go in last week for a conference with the vice principle about all of my daughters absences... Does the 504 help her with all these days she misses...she has had problems getting missed work from the teachers.

 

[ChampsMom]

Yes! Mmomnsyd - it does - will send you a pm with more info.

 

[Jmrogers4]

Yes Momnsyd she is protected under ADA and a 504 plan is exactly what she needs. When Jack was first diagnosed the principal asked me several times does he really need a 504 plan and I told her yes and brought her the templates from the CCFA. As I was meeting with the counselor to write it up she again came in and asked if it was really necessary, told me her son had diabetes and he didn't have a 504 (You can bet he had a medical plan though), we could just tell all the teachers to let him use the bathroom (as if that is the only accommodation he needs) luckily the school psychologist happened to walk by and she asked her and was told, yes he absolutely needed one. We have adjusted it a few times over the years as other issues have come up that we didn't think about on that first one and have a review every year, usually the week before school starts and this past year I called and requested another one as we were having some issues and needed to add several items.
Jack also has several people in each of his classes that know about his Crohn's and when there is a sub and he just gets up and leaves they always tell the sub, it's okay he is allowed to do that, he has Crohn's. If there was ever an issue and he got in trouble for it, he is to tell me immediately and Mama Bear will take care of it!

 

[Hope345]

Mehita,
thanks for asking. The meeting went VERY well. They were caring and listened to my long list and made it clear to our daughter they will help in any way possible, but her job is going to be good communication with all of her teachers. They said if she was showing that she is making an effort, they will work with her.

One thing they added that I loved, was to have another student take notes in the class using carbon paper . It remains private and one of us picks them up at the end of the day.

Her high school is in a huge transition and the counselor that worked with us will not be there next year. I am concerned about that, but if everything is set in place, hopefully the new counselor will be helpful too.

My daughter did not like all of the fuss and thought she did not need to go to all of this trouble since she is currently feeling well. She just wants to be treated like everyone else and keep everything private. She felt like everyone asked too many questions last year and she felt a bit overwhelmed. I assured her that this will all only come into play if it is needed and it is important to plan ahead just in case.

Momsnyd: I hope it all gets worked out for you. You are also laying the path for other children that will need the 504 plan at this school.
I wish the best for your daughter and she sounds like she is working very hard to be successful and deserves the opportunity to do so. That is exactly why the 504 plan exists.

thanks everyone. My daughter and I feel very confident facing her first year in high school with all of this in place.

On a fantastic note: She recently made the dance team for her freshman year and i can not even begin to tell you what that means to all of us.
(I was a nervous wreck, worrying about everything!! I was so proud of her for getting up in front of all those judges, having only had one week to practice and never had a dance class. I was worried that she would get hurt, not get on because of her Crohns and everything else under the sun.) Sometimes these little things are just what they need.

 

[ChampsMom]

Hope - I'm sure I'm not pmsing (but it is the second time today I've teared up!) But your post made me tear up! How exciting she made the Dance Team!! Success!! Yeah!!

Glad everything went so well with the 504 meeting!!

 

[Jmrogers4]

Congratulations on making the dance team! How exciting. I'm still good friends with my dance team peers from way too many years ago.

We should know in the next 2 weeks whether or not Jack will be going to high school or staying at his junior high for 9th grade. We applied to a private school and he was accepted but now we are waiting to hear if we will get enough financial aid to make it doable. They are supposed to let us know last week of May or first week of June but the school is 9-12. He really wants to go but we are all trying not to get our hopes up.

We have already talked about his accommodation there and they even made a few other suggestions and added it to the list. He shadowed a student last month and just loved it. Couldn't get over the fact that there were only about 20 people in each classroom. Talked to the football and baseball coach and we are getting tons of emails about next season from both of them.

 

[Momnsyd]

Thank you so much I did print out the template...and I will be calling the school tomorrow morning! Again Ty

 

[Mehita]

Someone correct me if I'm wrong, but the 504 covers any and all school district sponsored activities... i.e. dance team, tennis team, band, etc.

 

[Hope345]

Mehita: If you mean do the students get to be a part of those events while unable to attend school, I believe that is true. Hopefully we have an expert on this chime in

 

[ChampsMom]

Unless the school specifically writes in something different, it should apply to any/all school district activity.

For example: My son has a 504 plan in place for school activities but he is officially homeschooled through our Home & Hospital Instruction Program (HHIP). When he has to go in for testing (as required by our state law) their are bound by the 504 Plan. Today was one of those days when he was going in for a 3 hour test. When he showed up with his cooler of food (bigger than a lunchbox cooler, smaller than a picnic cooler) filled with snacks and drinks initially the test coordinator said he couldn't have the food in the room. To which my sister quickly responded, "Yes he can, he has a 504 in place that you're bound by. Also, incase you are not aware he can also...." then she went through the list and ended with "and you WON'T stress him out about it. Any questions?" (heh, heh... gotta love an family advocate! We call her the "other mother"!

He can participate in sports, clubs, school dances, etc., if he so choses and if our doctor supports extra activities (which he does). What was really important was to differentiate between the fact that he can do "extra" stuff but cannot do all day school - too much stress, too many missed days. IF he missed a dance, a practice, a game, a meeting - it doesn't affect his schooling - hence the difference.

Having said all that, doesn't mean they wouldn't try to fight you. As I mentioned earlier if you hit a wall, I would recommend finding out who the parent advocates are in your school district. One of the first individuals who was HUGE in helping me out has a son who has Down Syndrome. She's been fighting for his educational rights since he was a toddler and already knew everyone I needed to talk to about my issues. Rarely will school administrators or educators help - not because they don't care, but because they can't. The older the kids get in school the more distant administrators become (just from my experience), as they are dealing more with troubled students, not students in trouble.

Good luck!