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#210166 - 06/10/11 01:53 PM College scholarships, financial aid, and IEP's
Collins_Mom Offline
Registered Visitor

Registered: 06/08/11
Posts: 11
Loc: North Carolina
Does anyone know if there is financial aid or scholarship money available for kids with chronic illness? Also, at the high school level, has anyone had any success working with the school system on an Individualized education plan (IEP)? My son is battling fatigue and depression associated with his AS and the meds used to treat it. His grades are suffering. He has always taken honors classes and is a smart kid, he just feels horrible right now.
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Mom of 16yr old son with AS(takes humira, meloxicam, and sulfasalizine) symptomatic at 4 years old and finally dx at 12. Moderate to severe damage in sacroiliac and daily stiffness/fatigue. Also, 9 yr old son who is HLA B27+ and has some onset of symptoms but only use NSAID's as needed.

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#210416 - 06/14/11 04:58 AM Re: College scholarships, financial aid, and IEP's [Re: Collins_Mom]
pbeth Offline
Registered Visitor

Registered: 05/23/10
Posts: 125
Loc: Virginia, United States
Hi again,

I waited to reply because I'm definitely not an IEP expert, but I did have this discussion with my son's counselor at the beginning of last year. Here is what I know and other forum members, please feel free to correct me if I'm wrong.

An IEP is individualized education program that is required for students who need specialized instruction.

A 504 plan is a plan for students w/ disabilities that require reasonable accommodations. For example, an extra set of textbooks at home in the event that the weight of carrying textbooks back and forth causes problems; accommodations for extra absences to cover missed classes due to medical appointments; accommodations for extra time for the student to get to class when pain is a problem; etc.

When I talked to my son's counselor, he stated that it is rarely necessary to go through the 504 process when there is a physical disability. When teachers are aware of the situation and when parents communicate to teachers about absences, extra textbooks, or if extra time is needed b/t classes, that the teachers are usually very understanding. The counselor stated that there had been only one time in his career that he dealt with a teacher that was being very difficult. This of course led to a meeting with the principal of the school and the teacher was told to back off.

My son was taking several advanced courses this year as well. I felt we were somewhat misled about how demanding these courses actually were as my son was new to this school and didn't know better. It wasn't that my son couldn't handle the courses intellectually, but it was the homework load that was killer. And the fatigue on top of the massive amounts of homework was just unbearble at times. We both cannot wait until this year is over. Next year, his course load will contain NO AP or IB courses. I'm fine with that too.

If you are still interested in a 504 plan for your son, my friend who is a teacher said that there is a lot of information online to include examples of how to write one. To start this process, you would contact your son's counselor and some schools even have a 504 plan coordinator.

Hope this helps!

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39. UCTD w/ features of Scleroderma and Sjogrens. Poss. USpA: HLA-B27+, Dry eye syndrome, Raynaud's, ANA+. On Relafen (Nabumetone) and Plaquenil. 17-year-old son has AS: SI joints affected, HLA-B27+. Takes Enbrel. 14-yr-old son: pitting in nails, HLA-B27+. SpA-free so far!

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#210465 - 06/14/11 01:39 PM Re: College scholarships, financial aid, and IEP's [Re: pbeth]
TennisAce Offline
Registered Visitor

Registered: 09/19/05
Posts: 1315
Loc: NJ
I will chime in 2 parts:
504/iep Our school has been very accomodating with my daughter. They lessened her gym requirements. Every time she tries to do something other than tennis she gets hurt in gym class. Ripped on tendon in her shoulder doing yoga in gym. I just threw my hands up and our Rhumy wrote a nice note excusing her from gym cuz he knew she was already getting tons of exercise. Tough sell when your child is playing National tennis tournaments, but the Rhumy noticed that she got more consistent exercise when she was monitored by/accomodized by a trainer or pro.

We tried to get a plan for her for her ADHD and I finally had to surrender. We got official testing done. I got so mad at the end. The final question was "would her life be entirely different if she didn't have the plan?" Her Dean said "Only 10% of our school is taking calculus, and she is taking calculus. Therefore, she is fine and her is not being hurt not getting the plan." I just looked at her Dean and said "Just cuz she's smart, she's okay? She comes home in tears cuz she knows she can do better and you are not going to give her support cuz she got a C in one of the most advanced levels of senior math? She feels bad and she can do better?" I was so mad! I wound up negtioating with them for a couple of school provided tutors, but gave in on the 504 and extra time etc. and the state mandated funding.

So, not all is hunky dory when you actually push the system for the full entitlement. Sometimes it's easier to navigate the system when they don't feel threatened to be financially boxed into having to supply things.
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Daughter diagnosed 2004; son diagnosed 2006. Both are currently without spondy meds and currently in a medicine induced remissions. One has been pharma free for 3 years; the other one for 2 years.

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#210837 - 06/18/11 12:35 AM Re: College scholarships, financial aid, and IEP's [Re: TennisAce]
NotMeToo Offline
Registered Visitor

Registered: 07/12/04
Posts: 994
Loc: United States
Originally Posted By: TennisAce
We tried to get a plan for her for her ADHD and I finally had to surrender. We got official testing done. I got so mad at the end. The final question was "would her life be entirely different if she didn't have the plan?" Her Dean said "Only 10% of our school is taking calculus, and she is taking calculus. Therefore, she is fine and her is not being hurt not getting the plan." .... I wound up negtioating with them for a couple of school provided tutors, but gave in on the 504 and extra time etc. and the state mandated funding.

So, not all is hunky dory when you actually push the system for the full entitlement. Sometimes it's easier to navigate the system when they don't feel threatened to be financially boxed into having to supply things.


Originally Posted By: pbeth
When I talked to my son's counselor, he stated that it is rarely necessary to go through the 504 process when there is a physical disability.


Wow! This type of attitude by the schools is just wrong on so many levels. A student with a documented disability can not be denied appropriate / reasonable accommodations because it is inconvenient for the school. Yes, it is extra paperwork for the school. Yes, it is a hassle. No, it is not the school's choice. If a student medically qualifies for a 504 plan, LEGALLY the school can not refuse to provide accommodations. We were gently and politely persistent in pursuing a 504 plan for our daughter. By the time our sons' needed plans, there was no question or argurment.

I think a 504 Plan is an absolute necessity with a kid with Spondylitis. All three of mine have or had them (daughter just graduated High School). My kids plans allow them accommodations to help them perform well in their (Honors and AP) classes. Their plans cover things like: an extra set of books, extended time for standardized testing (due to hand and wrist involvement), extended time on lengthy written exams, use of the school's elevator, PE accommodations as necessary, extra time to make up work missed due to excessive absence and also deals with the overall issue of excessive absence due to medical reasons/medical appointments. We have always made it a point to use the special privileges only when necessary and have never had a problem with the teachers or school. My daughter sometimes had difficulty making it to school in time for her first hour class due to extreme morning stiffness. The past two years, her 504 plan allowed her to schedule herself for late arrival and "skip" first hour. My older two were granted accommodations by the College Board for AP exams and the SAT. Both were denied extended time, but were granted "breaks as necessary" and "small center testing". This allowed my daughter to take a break between each required essay to rest her hand. Even with the extra breaks, she actually finished before the rest of the test takers because, as a group of 1, she did not have to sit through the lengthy reading and re-reading of instructions, waiting for everyone else to get settled, passing out test packets, etc. One note of caution. The College Board takes 6 months or longer to process accommodation requests. IF you think your son may need it, start the process ASAP,

My daughter has opted not to request accommodations in college. At my (and her doctor's) insistence, she did register with her University's office for student's with disabilities. This will allow her to put a plan in place quickly should the need arise. Our scholarship search did come across a few scholarships for kids with arthritis and other chronic illnesses. They were mostly small, one time awards. Helpful, but ..... Most of the larger awards were targeted toward more significant disabilities.

These links may help you:
http://www2.ed.gov/about/offices/list/ocr/504faq.html
http://www2.ed.gov/about/offices/list/ocr/transition.html
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Not Me Too!

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#211016 - 06/20/11 09:42 PM Re: College scholarships, financial aid, and IEP's [Re: NotMeToo]
ancient Offline
Registered Visitor

Registered: 01/05/11
Posts: 246
Loc: Ill
My 3 sons all have ADD. One has an AS DX. And all have had IEP's for different reasons. I have even hired an advocate to fight the school district when I felt my child's needs were not being met. The guidelines are different for each state and have changed dramatically from my eldest to youngest. Sooo I always go in with an open mind and the knowledge that I know my child best and so should you. I would definitely seek and IEP if you feel your child could benefit. Sorry I can't help with the other questions. Check with the financial aid office at your local community college. They should be able to point you in the right direction. Good Luck!
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lori
diagnosed USpA Nov 2010. Changed to As 2012. Low Vit D
suffered since teenager multiple surgeries.IBS, Migraines, carpal and tarsal tunnel, TMJ, (failed Enbrel& Humira),Started Remicade sept. 2012,Methotrexate,Prednisone,Relafen, Amitriptylin,Gabapentin, Fioricet, Topamax,,Protonix,Amlodipine, Vit. D, Folic acid,

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