Re: CF school pamphlet & 504 plans

December 3, 2002

,

you mean you need permission to cough in school???? and to use the

bathroom? Sound draconian to me.

CF school pamphlet & 504 plans

If you still need to find a pamphlet for your school or care giver,

try the CF Foundation. Our Cf Center has pamphlets made just for

schools telling them what they need to know about CF and our kids. I

believe these came from the CF Foundation and I think you can even

get a print out of it off their website cff.org

Hope you find what you are looking for. As a teacher I can tell you

that 504 plans work. It makes accomodations (for coughing, using the

restrooms, makeup work etc.) not just a personal favor but a legal

necessity. You get to sit donw with your childs teachers and explain

what needs to happen and why. It really does help! Believe me, when

my daughter starts school she will have a 504 plan!

Have a great night!

Mom to hannah, almost 3 wcf and Tommy 5 1/2 w/ ashma

December 3, 2002

Dear list mates,

A few moms privately wrote asking more questions about other health

impaired/504 plans. I know people are often shy asking questions on

lists, so I thought maybe a few others also still had questions but

were shy about asking.

I know if you don't yet have kids in school, then these terms sound

confusing, and it's easy to understand why. In the past, I was an

advocate -- helping parents and school administrators figure out

accommodation issues. Some parents thought that a 504 was a program

that you enroll your child and wait for the school to contact you.

Some thought that getting a 504 just involved signing a form letter,

which then entitled your child to every program or accomodation

imaginable.

Whether your child has a 504 or an Other Health Impaired (OHI) plan,

you are the one creating the plan. The beauty of it is that it is

customized just for your child.

In a way, it tells whatever story you want it to tell about your

child. There isn't any check list or form letter, unless your school

gets creative and designs a form so all you have to do is fill in the

blanks and sign on the dotted line.

To help some moms understand, I sent them a copy of the OHI plan that

I created with my son's wonderful school nurse. One mom responded that

this helped her finally see what goes into a plan, and she suggested I

share it with the list.

I hope this makes it easier to see that you can use any wording you

choose. This is your child's plan, and it is very unique to your child

and his/her situation. Don't be afraid to be creative and specific! It

can be as short or long as you like.

My son's plan mainly dealt with the sensitivity issues of CF. I never

wanted him to feel different because of CF; however, the plan was

primarily written to help teachers and staff recognize a potential

health crisis and know the steps to take.

I didn't worry about accomodating academic issues in the plan -- he

was a strong student and didn't need academic assistance or

accomodations, even during the times he missed days due to

hospitalization and mono.

Kim

Mom to (23 with asthma and cf) and (asthma no cf)

Mom at heart, but educator and writer/editor by profession

------------------------------

Hi,

First, I always recommend that before parents meet with school

officials that they create a list, asking themselves questions such

as:

1) Based upon my child's chronic health issues, will my child need any

specific physical, emotional, and academic assistance and/or

accommodations to help him meet expectations and goals of the school?

2) If so, what type assistance and/or accommodations will help my

child function well in school?

3) In times of ill-health, how do I see the school helping my child

meet his academic goals?

4) If a medical emergency arises at school, how do I want school

officials to handle it? (And do I know the school's medical emergency

policy?)

5) If a problem comes up that affects my child, and the school does

not take immediate corrective action, do I know the steps to take --

and what timeframe I am willing to give the school in order to meet

compliance?

5) What steps am I prepared to take if the school does not comply

within the allotted time?

Second, before the first day of school, the school nurse and I

collaborated by phone to update my son's OHI plan. Then, sometime

within the first 10 days after school started, I attended a meeting

with the school nurse, the school counselor, the principal, and each

of his teachers. Each of us were given a copy of the recently revised

OHI plan. This was an opportunity for teachers to satisfy their

curiosity -- ask questions about my son and CF, and for me to address

any concerns.

Note: Each situation is different because of your child's health, but

I never held this meeting before the start of the school year because

I wanted teachers to have an opportunity to meet my son without the CF

label. We always waited about 10 days into the school year to have

this meeting.

Please note that all information in your child's file is confidential

and only parties with a need-to-know basis will have access to the

file. People viewing your child's records must sign the file, stating

the date and reason they are viewing the file.

Below is the OHI plan that the school nurse and I wrote for my son.

The language is *very specific* because I was sensitive that my son

*not* be singled out in class due to CF. I wanted teachers to be aware

that CF wasn't an open book to -- he is private, and he would

disclose whatever he felt was appropriate IF he needed to. He has

always been this way, and I respect his need and right to be treated

like any other student as much as possible.

Confidential

Other Health Impaired Plan

Student: Payne

Payne is a student in your classroom. has cystic fibrosis

and asthma. He is private and selective in disclosing information

about his health.

may need extra time getting to class, especially where stairs

are involved, and should not be penalized for tardiness. He is a rule

player and will not take advantage of the situation.

needs to drink plenty of water. He may need to stop on the way

to class or be excused from class to get a drink. Again, he can be

trusted to not take advantage of the situation.

At certain times of the year, 's cough may increase due to

allergies. may try to stifle his cough. You might quietly

approach to see if he would like to go to the restroom to cough

out the phlegm or get a drink of water.

[Note: Because likes to be unobtrusive, he often stifles a

cough, which isn't good. The above suggests to teachers how they can

unobtrusively intervene to help him. Because was an obedient

kid, I knew if a teacher approached him this way, he would be open to

their suggestion.]

Changes in 's cough could signal an exacerbation or an emergency,

these include a frequent tickling cough that may stifle, or a

barking cough.

An immediate emergency exists if you notice the following:

Paleness, with blueness of the lips and nailbeds

A cough that produces blood

He tells you, " I can't breathe, " " My chest hurts, " or I need to call

home. "

Again, can be trusted to tell you what he needs. If he says he

needs help, he does!

If is able to walk, buzz the office to alert them, and have

another student accompany to the office. Students familiar with

's CF and have a comforting effect on him are Mark Simpson and

Lindsey. If they are in your class at this time with , you

may send them to the office with , or you can request they be

called from another class to wait with in the office. Their

parents have given permission. "

Next, a separate page at the back of the OHI gave emergency

procedures:

Call Mom at the following numbers:

Home....... Work....... Cell........

If she is not available, call the following:

Friend:.........

Friend:..........

Grandmother:..........

Father:............

[Note: The reason for this order is that 's dad is a dairy farmer

and was never near a phone except during the noon hour. 's

paternal grandmother lived down the road from us, and was always home

near her phone, but she and 's dad truly freak out in medical

emergencies so are basically useless. The two friends I listed were

much better with medical emergencies and could be trusted to keep a

watchful eye in the ER or doctor's office until I arrived.]

Based on school policy, I signed a form that was kept in the back of

the OHI giving the office permission to transport by ambulance in case

I wasn't available -- or in case I deemed the emergency was such that

he needed immediate transport instead of me going to the school.

I could really count on the school nurse; she was an angel. There were

a couple times that I felt needed to stay home but he loved

school so much he'd beg to go. So I'd call the nurse and tell her

" We're on alert status, " and she'd immediately go into action.

She would fax an alert to his teachers, counselors, and principal that

basically said:

Confidential (this was always in big, bold letters)

ALERT (this was always printed in HUGE letters -- about 20 point font)

Student: Payne

's mother called this morning to say is experiencing some

respiratory distress. He is on alert status until further notice.

Refer to his OHI plan, monitor for any changes in his health and

follow emergency procedures if needed. If you have questions or

concerns, call me or you may reach his mother at..........

The nurse would make a copy and send it home with ; I'd sign it,

make a copy and send it back so we'd have clear record of the request.

When 's health stabilized, I'd call her again to let her know the

alert was off, and she'd make a note of the phone conversation in his

file.

For , the two times we used this health alert was 1) when his

doctor dumped a high dose of Prednisone into and it made him

sick for a week, but stubbornly refused to give up or give in,

and 2) caught mono and spent about two weeks in January 1997

sleeping. He'd try to go to school but would barely make it through

one class, then come home and sleep the rest of the day and night.

I don't remember 's assignments during the time he had mono, but

I do know the teachers gave him a long time to complete everything.

Thankfully, was an A-B student; many of his teachers said that

other kids would come to school with a cold and whine about not

getting work done because they didn't feel well, but they said not

once did they ever hear complain about his health.

Kim

December 3, 2002