504 Resources? — The Bump
Special Needs

504 Resources?

edited December 2013 in Special Needs
Are 504's state specific?

I'm starting to be a little nervous even though DD1 won't start K until August 2015 (unless we by some miracle get into the headstart program, after all of the income based kids are in).  
I spoke with a teacher whose also my cousin who basically made it seem like 504's were a joke.  She said she has a student who has cancer and the 504 doesn't really "do" anything for him.  

I guess my main concern or what I would want out of a 504 would be things like, her being allowed to use the bathroom as often as she needs, this isn't "ideal" since she has to go every 20minutes most of the time, but she doesn't really need help.  We could be cathing again by then, with the way things are going for her bladder so who knows.  And also, the fact that she has 20+ doctors now, means she is going to miss school, and likely on a weekly to bi-weekly basis. Do 504's have anything to do with this?  I don't want her to be behind because of appointments, but it's unrealistic for us to schedule her appointments after school since they are so far away, or only on breaks, since we see them every 3 to 6 months and most of the DR's are now department heads who only do clinics 1 or 2 days a month, no negotiation.  
I spoke with our disability resource center rep on Thursday but she said she didn't know of any 504 work shops and she's only versed in IEP's which I do not think P will qualify for. 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: 504 Resources?

  • -auntie- said:
    Are 504's state specific?

    No. Section 504 of the Rehabilitation Act is a federal law that comes out of the Americans with Disabilities Act. Compared to IDEA, which is solely focused on education, Sec 504 is more civil rights legislation.

    I'm starting to be a little nervous even though DD1 won't start K until August 2015 (unless we by some miracle get into the headstart program, after all of the income based kids are in). 

    So you have time to work through this.
     
    I spoke with a teacher whose also my cousin who basically made it seem like 504's were a joke.  She said she has a student who has cancer and the 504 doesn't really "do" anything for him.  

    A Section 504 doesn't have the teeth an IEP does.

    There's a great chart comparing the two in The OASIS Guide to Asperger Syndrome. It's not ASD specific, fwiw. The authors of the book each have a son with Aspergers. The one had an IEP that offered all kinds of services in a special school on the district's dime. The other had a Sec 504 which allowed him to use a keyboard for all his written work which covered him taking the PSAT and SAT. 

    Section 504 is more of a "wish list" of accommodations rather than services- a wheelchair lift to the stage or additional time on high stakes testing. I'm trying to wrap my mind around how a child with "just" cancer would be served by a Sec 504 unless he had lost limbs or intellectual abilities through his tx. It's what a good teacher would do without being told.

    I guess my main concern or what I would want out of a 504 would be things like, her being allowed to use the bathroom as often as she needs, this isn't "ideal" since she has to go every 20minutes most of the time, but she doesn't really need help.  We could be cathing again by then, with the way things are going for her bladder so who knows. 

    It sounds like a IHCP makes more sense. This is the document most kids with Type 1 Diabetes have in my district. The IHCP typically includes a school nurse on the team who can act as an advocate with teachers.


     And also, the fact that she has 20+ doctors now, means she is going to miss school, and likely on a weekly to bi-weekly basis. Do 504's have anything to do with this?  I don't want her to be behind because of appointments, but it's unrealistic for us to schedule her appointments after school since they are so far away, or only on breaks, since we see them every 3 to 6 months and most of the DR's are now department heads who only do clinics 1 or 2 days a month, no negotiation. 

    You may need to make some difficult choices. 

    Does she need to see all of these physicians? What does she get out of it? Is the trade off worth it to her or is monitoring something that satisfies their professional curiosity? Given that she's going to be older and probably to a point where what is, is does she need to be seen so often? Could you schedule annual visits during the summer or breaks? 

    Some doctors could probably be moved to once a year, but that still leaves a lot who can't.  Like urology, she has to go every 3 months and have kidney scans, not negotiable.  None of our doctors offer early morning appointments, especially docs who also do procedures because if they do, that's when they are doing them is at 6am.  To get her somewhere at VCU at 6am we'd have to get up at 3am, I'm not sure that would be conducive to a good day at school for her either.  I'm looking through our list and urology is certainly one that will always be an every 3 to 6 months because her kidneys are too fragile (same with DD2).  Rheumatology, who is new will monitor her EDS and could probably do every 9 months instead of every 6. But if she's having pain (which she is..) then I don't know how often. Cardiology is in town, so that's not as big of an issue but I don't know how often they will need to monitor her ongoing with echo's because EDS affects the heart.  Same with eyes, we are on 1x a year but with the EDS now they may want us to go back to 2x a year.  Spina Bifida clinic is non-negotiable and we do see a lot of docs while we are there, and do her xrays, but it's only the 3rd Wed of every month from 8am to 10am and we do 2x a year. Docs like hematology & genetics will probably be phased out more going forward and will just retain on an as needed basis.  It's going to be incredibly difficult, and if she didn't love school so much I'd consider homeschooling her.  

    I really don't know about the IEP/PT because our district really seems not to do anything unless the children have a severe impairment, and hers isn't. She is typically scared to play on a lot of equipment (I know they've been working with her on this at preschool, she was the only child who wouldn't play on 1 piece of equipment.)  Even at play places, she won't do much that involves climbing, etc.  

    Did I mention I hate change? Ughhh.

    I get that it's inconvenient because of distance, but once she's in school, she belongs in school as much as possible even if it means some inconvenience on your part. <said the woman whose son had a standing 6:30 orthodontist appointment every 3 weeks in 7th-10th grade, not the same but I sure wished the ortho would have done afternoons> This isn't going to be a huge deal early on, your LO is quite bright. But if she's going to continue to see 20+ physicians going forward, she will hit the wall at some point. You can't force a teacher to preteach/reteach material missed for medical appointments. In the early days, most will. But assessments could become an issue. Teachers will have to administer tests when she is there which may eat into her social time at recess. And state mandated testing could eat into instructional time if she has to sit make up testing.

    In secondary, coordinating missed work could become even more complicated. Suggestions may be made to dumb down her classes or enroll in a cyber charter to allow the flexibility she needs form medical care.

    I spoke with our disability resource center rep on Thursday but she said she didn't know of any 504 work shops and she's only versed in IEP's which I do not think P will qualify for. 


    I wouldn't discount the IEP. Thinking back to the ballet debacle, I think she might qualify for PT and even APE given her CP, tone and EDS. Accessing the playground equipment and participating in gym are both educational needs.


    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • I just wanted to chime in that the school calendar for the following year is usually released really early--I think ours comes out in October. If you have the calendar well ahead of time, you might be able to schedule some of those out of town/longer appts on teacher conference days or during breaks. Our county builds plenty of extra instructional hours into the calendar, so I think we'd have to have over 15 snow days before it would have any impact on the calendar--it's pretty much written in stone.
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  • mrszee2b said:
    I just wanted to chime in that the school calendar for the following year is usually released really early--I think ours comes out in October. If you have the calendar well ahead of time, you might be able to schedule some of those out of town/longer appts on teacher conference days or during breaks. Our county builds plenty of extra instructional hours into the calendar, so I think we'd have to have over 15 snow days before it would have any impact on the calendar--it's pretty much written in stone.
    That's a good idea to get the calendar early, unfortunately we do have  A LOT of snow days typically and the kids have to go extra days at the end of the year.  I'm just not sure what to do about the fact that the majority of her important appointments, are only offered on 1 or 2 days a month, so I won't have much wiggle room.  Most of our docs are at VCU about 1.5 hours from home, so the drive, plus appt plus home tends to take the whole day, especially if it's a clinic appointment.
    I'm just not even going to think about it right now! lol
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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