Question about 504 Plans

[arabeth]

Hi Everyone! We finally made our move and we are now in South Texas enjoying the lovely weather. Sure beats the heck out of Minnesota this time of year ..

I had a question thou, if anyone can help me. Luckily both my daughters with CF are very healthy so I've never really needed to look info 504 plans or anything like that before. But with the move and all I thought I'd look into it and see if it were something that may benefit the girls in any way. One thing I discovered is that it would cover their nutritional needs so they could be allowed larger servings at lunch, be allowed to bring snacks that are high in fat rather than the traditional healthy stuff the school requires, etc. Also, if they did have to miss school or anything due to being sick, it would help them be allowed to make up work and stuff like that. So, anyway, I did some research and thought I came here totally prepared, however, when I went to the school, I was told otherwise. They are not refusing to work with me...they said the girls can bring snacks and they will look into the bigger lunch servings and see if they could do that but that the girls do not qualify for a 504 Plan because they are doing well in school. I was told that a 504 Plan is only for children who's grades are suffering due to their medical problems. If the girls are maintaining their grades then they assume they are doing fine and they are not legally required to do anything for them. Just wondering if anyone has any info on this they could share with me. This seems really backwards to me...basically they are saying the girls first have to fail, then they will cooperate with them....it seems so much smarter to me to first work with them so they don't have to fail...

Thanks everyone!

 

[Jenni]

What their telling you is so not true. I just did one with my sons school, he is in kindergarden. They are putting an air purifier in the class room, On the second day he is absent from school a tutor comes to the house for him. A 504 plan is for any child that has special needs. The school by law has to do whatever will help benefit the child and make their school day easier. I was told by is school they have to do whatever he needs to accomadate him. If you have anymore questions email me. rugrats3@hotmail.com

 

[anonymous]

Absolutely not true. A diagnosis of cystic fibrosis automatically qualifies your child for a 504. Ask them for the handbood with the 504 description and/or check with your social worker at the local cf clinic and they will help you clarify such. Good Luck. Jo Ann

 

[anonymous]

Jenni- you are already an activist and a great contributor! Knowledge is Power.

 

[Jenni]

Thank you, and your right knowledge is power. A month ago I didn't know anything except my kids were positive for cf.I thought the world as I knew it had come to a halt. I was right it did, but it opened a door to a world were I can make a change and a difference for my childrens sake. Now through constant research I know a whole lot more. I believe as I know you all do. Our children our the heros and the survivors of this. I will be damned if someone tells me my child doesn't quailfy because their not sick enough or not failing yet. Through all of this in the past month I have learned I am not a parent to be messed with. I will fight with every breath in me as you all do for our childrens rights, but most of all for a CURE. You as a parent have to be the voice of your child in school otherwise they won't change a thing or do a thing for you. Demand for them do what is needed for your child or go to the head of the school system in your area.

 

[anonymous]

A 504 plan is made for students in regular education who have a physical or mental condition that affects a major life activity.
Major life activities include caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, working, and learning. CF qualifies because it is a chronic disease that affects breathing. Also, if absenteeism is high due to sickness and/or hospitalizations, learning is also affected.

You may want to search "504 plans and cystic fibrosis" on a search engine. I have found many examples of things that are included on a 504 plan for those with CF. If you need any links, please e-mail me at mdgoslin@comcast.net. Good luck!

Maria (mother of three daughters, the youngest Samantha w/CF)

 

[arabeth]

Thanks for all your responses. You've confirmed what I thought. It just didn't make sense to me that my the children first have to fail then the school will step in and work to help them do better. The fact that they are doing so well is wonderful and I'd like to make sure that doesn't change. I'll see what I can do to persue the issue. Thanks again for all your help!

 

[anonymous]

Renee,

hopefully it won't need to go this far, but if you end up meeting resistance and need to get some legal information, there is a woman by the name of Beth Sufian who does disability cases for CFers, but she also has CF herself. I am sure that she would be willing to help you out and advocate for the law. People always seem to cooperate better when they've got a lawyer telling them how it is. You can find her number, or email by doing an MSN search on her name, her practice is based out of Texas.

Best of luck,

Julie

 

[seasprite]

Good point, Julie.

Another useful resource is a booklet called "Cystic Fibrosis in the Classroom", which gives an overview of CF, explicitly explains why children with CF qualify for 504 plans (and <u>should</u> have them, even when no health problems are evident), and gives examples of modifications that might be appropriate to include in such a plan. We have found that teachers and administrators are often remarkably more responsive when our requests are backed by published statements. You can order copies of the booklet either from CFRI at (650) 404-9975 or from Digestive Care at (610) 882-5950.

Bambi, mom of Jordan (16), who has had a 504 plan for years

 

[anonymous]

I kept my grades up and was stillon the 504 plan. I would push for it....if they need a reason other than they have cf this is what you drill into their head....that you never know when cf will affect them or when they get sick how bad it will be.....and they may get a cold and wind up out of school for a week or more. Get doctor notes....do research and print out things on 504....they are supposed to give you a book on it if you ask for it. If neccessary get a child advocate....I have a friend up north that had to do that....Her child wasnt failing but missing alot of school and they still wouldnt let her on 504...when she got the child advocate they listened....its a good thing to because she missed 2 weeks in a row...then she would have been failing. I mean whats the point in not helping you before you start failing.......why not get ready for the problem and work on it before it happens....
amanda

 

[anonymous]

Hi jenn- my name is jennie i have 2 teen boys with cf. they have had 504 plans and or iep (INDIVIDUAL EDUCATION PLANS) for 11 years. what they are telling you at school is so wrong. my kids have them all the time it helps keep things rolling smooth with school. I can't make there CF conform to there needs so I wrote a letter to the school and TOLD them that they would have to bend to help my kid have a successful time in school. You know what It worked they are bending over backwards to make sure that they don't fail due to them missing school for illness or dr appointments. they give them extra books for home if they go in the hospitals and tutors if they miss 3 days in a row of school for illness. you are your kids best advicate yougo and fight for what you want they say no GO TO THE SCHOOL BOARD!!!!! We all want the best for our kids and they have so much to go through school should be the least of there stresses. That is how I feel. I hope that it helps jenn.

From jennie in Freezing New Hampshire I am so proud to have my two boys. It is very far from easy but They deserve to have me fight for what is right for them.

 

[anonymous]

hi jenni-

I'm a jennie- i have two teen boys with cf. The message you wrote wow. you are getting the hang of things you are your childrens best advicate. You know them better than anyone. You have to make them listen. you go girl we are all proud of you. Keep up the good work. I have found that it doesn't stop at school. There have been times when you have to get tought with the doctors and nurses too. sometimes they don't see all that we parents see. Especially in the hospital. Ask questions. you ask them every where else why not there too. Who are the drs. going to listen to small children or there parents. make them listen. knowledge is deffinetly power.

As my 16 year old son would say" knowledge is power, use it wisely my young padawan apprentice."
He loves Star Wars. take care and good luck in the future