I searched the site for this information before posting and it came back with no results. I am a mother or a 13 year old diagnosed 6 months ago with CF. Some other Cf'er told me to get a 504 plan for her. I had not heard of it and wondered if any of you have one (CF'er) or make one (parent of CF'er). Is it worth it? What do you put on it? The way I saw some people wording it makes me worry that they will treat my daughter too differently and she does not want to stand out at this point in her life. (Parents of teens, I am sure you understand) Did your case worker help you with it or did you contact the school on your own and take care of it without the help of your team? These feel like dumb questions but school restarts here soon so I wanted to take care of it and get my dumb questions out of the way.
504 Plan?
- Thread starter leecee
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Aboveallislove
Super Moderator
Maybe try an advanced search because it got a bunch of hits for 504 plan.. Also here's a good http://www.happyheartfamilies.com/articles/article/6447390/130282.htm
A 504 is pretty informal as opposed to an IEP, an Individual Educational Plan. They are based upon different federal laws designed to protect people with exceptional circumstances like your daughter . It can help her get what she needs in the ways that she needs it and wants it. Since we know nothing of her symptoms it's difficult to suggest provisions. But for example, if they want her taking enzymes before eating, she might have to go to the nurses office under the schools rules for medication. Since she's a teen, she might feel that draws attention to her that she doesn't want. Under a 504 you might be able to let her carry her enzymes in her lunch box for discreet administration instead. There are no provisions that MUST be included. But whatever IS included must be followed by the school. They are provisions you and your team design specifically for your daughter and her situation and the school must follow them.
The link by Aboveall is spot on. It's a great site by Lisa Greene, who has children with CF and has written a great book about parenting children with chronic health conditions. As I recall she has samples of 504s too. I would also check with your newly acquired CF Team. Both the social worker or psychologist can help construct one. Your CF centers hospital may also have an education department that will help you draft one and have lots of samples and suggestions too.
You really also need one to cover future contingencies. What happens if she is admitted to the hospital. Or is home sick a lot. Most schools have a limit i6n the number of absences a child can have before they are retained in their current grade for another year. That is addressed in most 504s too so it doesn't happen to your daughter. It's definitely worth looking into it for her.
The link by Aboveall is spot on. It's a great site by Lisa Greene, who has children with CF and has written a great book about parenting children with chronic health conditions. As I recall she has samples of 504s too. I would also check with your newly acquired CF Team. Both the social worker or psychologist can help construct one. Your CF centers hospital may also have an education department that will help you draft one and have lots of samples and suggestions too.
You really also need one to cover future contingencies. What happens if she is admitted to the hospital. Or is home sick a lot. Most schools have a limit i6n the number of absences a child can have before they are retained in their current grade for another year. That is addressed in most 504s too so it doesn't happen to your daughter. It's definitely worth looking into it for her.
My 14 year old has a 504 plan. I found meeting with my daughter and the school nurse to come up with a plan worked for us. Also find out your state rule for homebound instruction. For us if my daughter misses 5 consecutive days or 10 cumulative days, then she gets home bound at least 1 hour per day absence. She also has no points off for late work. We prioritize exercise and breathing treatment as chest PT over homework sometimes and make sure she is never up past 11 on school nights. She catches up by the weekend. She very very rarely used this, but in high school grades count and in her school late work in honors classes is zero points without the accommodation. We also have an accommodation for excused absence with a parent note. We rarely see a doctor when she is sick. Her pulmonologist calls in meds based on sputum culture and she sees her at the end of the med to make sure PFTs come back up.
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isaacsmom
Guest
My 11 year old son has cf. He has a 504. I'm also a teacher. The 504 plan allows him to take his enzymes in the cafeteria with his lunch. He also is allowed more days to make up work if he is out sick. He is not treated differently in a negative way at all. The 504 makes sure that everyone is on the same page.
Simba15
Member
I was a 504 coordinator for many years. A 504 plan should be requested if your child has a disability which affects a major life activity (which she does: breathing, energy). 504 plans fall under civil rights legislation and give a child protections under the the CR act. Your child remains a regular education student with accommodations. These accommodations are a legal document and the school MUST follow them - even if she moves to another school. The school will want disclosure of her diagnosis. You have to weigh if you want them to have this information.
A 504 plan will protect her if she is absent frequently due to illness.
To get 504 plan the PARENT must contact the school IN WRITING and state that they want a 504 meeting to be held to discuss the possibility of a 504 plan. You will need a note from an MD stating her diagnosis and how this impacts a major life activity (breathing, hospitalizations, etc). You bring that to the meeting and state you want a 504 plan. You should already have in mind what accommodations you are looking for.
A 504 plan will protect her if she is absent frequently due to illness.
To get 504 plan the PARENT must contact the school IN WRITING and state that they want a 504 meeting to be held to discuss the possibility of a 504 plan. You will need a note from an MD stating her diagnosis and how this impacts a major life activity (breathing, hospitalizations, etc). You bring that to the meeting and state you want a 504 plan. You should already have in mind what accommodations you are looking for.
We used Lisa Greene's site and her letter to teachers as a guide. Also included info from the links she posted -- CF in the classroom, some CFF info regarding enzymes. The school used the letter to teachers as the basis for the 504 plan. Basically making sure DS gets his enzymes, bathroom breaks and access to water if needed, reminder for school to enforce sick policy and that the other person wcf a few grades below ds don't come into close contact. Reminder that ds is a normal child, who can do normal things, just has a couple extra provisions (enzymes) to keep him healthy.
DS did have an IEP; however, it wasn't for CF, but so he could receive speech therapy services when he was in kindergarten. By 3rd grade it wasn't necessary anymore.
DS did have an IEP; however, it wasn't for CF, but so he could receive speech therapy services when he was in kindergarten. By 3rd grade it wasn't necessary anymore.
Our clinic never provided any information for us. I took it upon myself to write a letter based on this... http://www.happyheartfamilies.com/articles/article/6447390/109108.htm And then asked the school nurse to coordinate with DS' teacher(s) to just have a meet and greet to go over any questions they may have. Basically I threw together a bunch of info, some that I explained isn't pertinent now, but could eventually.
Simba15
Member
Some schools give push back on 504 plans. the best bet is not only an MD letter stating the dx, but HOW it affects a major life activity. The best MD letter give accommodation suggestions.