I am working on the 504 for my 3rd grader and kindergardener. I am doing the 3rd graders to cover needs in the event she starts menses during the year. I am looking for examples of accomodations for both girls though. Do you have a plan? What did you list?
SeHi there. I don’t have any examples of a 504/IEP to show you because my school district allows each school to determine what they feel is necessary and I refuse to have a 504. That is if I could get them to deal with me.Having VWD qualifies for an IEP. My kids all have VWD type 1,but all bleed diferently. I would push for an IEP because 1) you need to have a plan in place for any missed school, 2)they need a plan for parental notification if anything happens at school and 3) most importantly the school needs a plan for treating your kids when something happens at school. ALL of this needs to be in WRITING and a copy of the basic emergency first aid delivered to ALL teachers he has classes with ( PE, library,art,etc). You cannot trust the schools to treat them properly. My son either passed and hit the back of his head or hit back of head and then passed out (we don’t know which way) and they SHOOK him til he woke up and then made him walk by himself to nurse’s office. He also has a shunt and a bunch of other stuff too. According to every doctor, hospital, and ambulance service here, any ‘normal’ child who did what my son did should’ve been back boarded, collared, and transported to nearest ER, let alone a kid with everything my son has. You cannot trust the nurse to go to your kid if he gets hurt. And no other kid should have to go with your kid to the nurse’s office either. It should be an adult who can pick them up if necessary and at worst drag them. I always jokingly say that I don’t care if the custodian has to put them in 1 of the big trash cans and wheel him to office as long as it’s an adult. Little do they know but I’m being serious. Young children should never be responsible for another kid especially when they’re hurt. You also need to have a conference with all teachers,principal, nurse,etc) so that you know what they know,understand and feel comfortable with. Have your treatment center help you out. 9 out of 10 times they will freak out for nothing. Then they’ll get relaxed about it and stop freaking out. And then the 10th time will be the time they should go overboard treating them and they won’t. And unfortunately it’ll be the kid who pays for it and then we have to pick up the pieces and clean up the mess. Not to mention how you’ll probably want to seriously maim the people at the school. Trust me it can happen. It’s happened to me more than once and with more than 1 kid. Hopefully your schools have a brain and are willing to use it. Injuries always happen,I expect it. But I also expect the schools to take proper care of them when it happens. All of my kids have individual medical kits that are at the school for injuries,etc and I restock them when they get used. My motto is plan for the worst and pray for the best. And so far the worst hasn’t happened. Knock on wood. For my girls, they have permission to carry a little backpack purse at ALL time for tampons,pads,wipes,noseclips,etc. They also have permission to go up to the teacher and tell her that they need to change. If it’s a male teacher,they can just show the purse. We only have 1 teacher who is a pain but he’s a jerk anyway. He always complains about blood on the seats. We tell him that he should’ve let her go then. Also if they need to change between classes they have to go to nurse’s office. That way they will get a late pass and won’t get detention. Plus if they’ve leaked they change clothes or call home without having to walk though school with a stain showing. My girls always take a sweatshirt with them or wear long shirts that will cover them if they need to during their period. Hope that helps. Sit down and make a list of everything that might go wrong and then make provisions to cover them. Otherwise Murphy will get you. He’s gotten me a few times. Ha ha
I sat down with the principal on Friday and we discussed it. He seems GREAT about it and is very encouraging of the plan. He also had the nurse come in and asked her if we have any other children currently in the elementary with bleeding disorders. There is not and he said he would be open to an inservice from hospital staff or myself to train ALL the teachers and workers on it. 
He also prefferred the paperwork I had rough drafter compared to what they use and asked for an electronic copy so they can use it in the future. Hopefully it’ll continue to go this well as they get older and switch into other schools. Thanks so much for your advice!
That’s great. I’m glad to hear that not all schools are as difficult as mine are.
Hi all,
I realize this is an extremely old topic, but given that many of us on this site probably have kids with vWD this topic might be salient for a lot of us. I happen to be a school psychologist so I might be able to provide some insight regarding IEPs vs 504 plans for students with vWD.
Generally speaking, for a student to qualify for special education/an IEP for a health-related condition like vWD, the school’s evaluation would have to demonstrate that the student’s health condition 1) limits either strength, alertness, or vitality, AND 2) adversely impacts their education, AND 3) necessitates specialized instruction. A 504 plan, on the other hand, is much less specific and essentially allows for a student to have any accommodations they might need, but does not provide specialized instruction.
Because of the distinction in requirements between the two plans, in most cases I would imagine that a 504 would be more appropriate for most students with vWD, although it would depend on severity of their condition. For instance, if as a parent your concerns revolve around things like having a plan in place in the event of some kind of accident or trauma of some kind, or feel that PE activities should be limited, a 504 plan should be able to easily accommodate your needs.
An IEP, on the other hand, would be considered more in the case of, say, a student who is quite anemic (i.e., fulfilling the ‘limited strength, alertness or vitality’ criterion) who is so exhausted that it adversely impacts their education and who actually requires specialized instruction to learn effectively (i.e., actually having to have instruction tailored to your specific needs because you can’t learn effectively in the general one-size-fits-all manner).
Hope that distinction is helpful for anyone with kids who have vWD who are going through or considering the special ed/504 process.