Accommodations for students with CF

[Guest guest]

This was the link that couldn't come through..........has various

accommodations!

Special Accommodations: List appropriate and necessary ways to help the

student manage health care while in school. These may include:

Extra portions of cafeteria food 

Unrestricted access to water

 Snacks during the day

 Unrestricted bathroom visits

Extra time to get between classes

Individualized physical education program

Extra set of textbooks kept at home if carrying books between home and school

is too great a burden

Elevator use

Flexible attendance schedule Emergency Procedures: Prepare for unpredictable

situations. If your child has a history of asthma, heat exhaustion,

hemoptysis, bowel obstruction, or has a PICC or Port — describe symptoms that

can alert

personnel when action is necessary. Provide language your child might use,

such as: " My chest hurts, " " I can’t breathe, " or " I need to call home, " along

with visual cues to look for — lip and nail bed color, pallor, or a sudden

change

in cough. List names and phone numbers of backup people in case you cannot be

reached. Always list the name(s) of your child’s physician. 

Do I Have to Rewrite the Health Plan Every Year?

 The Health Plan should be 

updated at the beginning of each school year. You will again meet with the

nurse, principal, counselor, and team of teachers. Some school districts adhere

to strict protocol and require a parent and the school team to meet again at

the end of the school year. If your  child’s health care is complex or there

is

a history of noncompliance with the Health Plan, meeting throughout the year

may be a good idea.  

Transitional Milestones — Closing the Gap 

    The first milestone is when students move from elementary to middle s

chool. They become more mobile, traveling from one class to the next, and are

suddenly faced with more teachers, one of whom now answers to " Coach. " Homework,

hormones, peer pressure, and cliques also increase. Students with CF should

continue the process of gradually taking more responsibility for themselves.

Often they find CF must be " retaught " to new teachers, office staff, and a

widening circle of friends. Some begin to shut down on talking about CF at this

age

because they do not want to appear different. It’s important to the child’s

emotional development to feel his or her needs are acknowledged and

understood. 

A second milestone is the tran-sition to high school. To hormones, homework,

peer pressure, and cliques, add driver’s license, dating, and perhaps a

part-time job. As the senior year approaches, add stress of " What do I want to

be

when I grow up? " By the senior year, students should be primarily responsible

for their health needs, while the parents are the backup advocates.  The third

major academic milestone is transitioning the student to post-secondary

education. Many, perhaps for the first time, move to a new location, leaving

family

and friends behind. This is a time when reality hits students: they are

ultimately responsible for their health. Although it’s often difficult for

parents to

watch the choices they make, students should be able to express their needs

to medical caregivers, instructors, and employers. Colleges, universities, and

technical schools are required by law to provide reasonable accom-modations to

students with qualified disabilities or impairments, such as CF. Most

post-secondary education institutions have an office of Student Disability

Services

or an individual who oversees the needs of students with qualified 

disabilities. The office acts as a liaison between the student and instructors.

Not all

students with CF feel comfortable registering with office, but registering is

an important safety net in case a special need (such as an unexpected hospital

stay) arises during the semester. Current documentation  (within the previous

3 years), 

CF Life/Fall 1999    9

Back | Home | Next Page | Newsletter Index

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Hey... Deja vu. I wrote this for Ortho McNeil in '99.

Kim

Mom of (24 with CF and asthma) and (21 asthma no CF)

>

>

> This was the link that couldn't come through..........has various

> accommodations!

>

>

> Special Accommodations: List appropriate and necessary ways to help the

> student manage health care while in school. These may include:

> Extra portions of cafeteria food 

> Unrestricted access to water

>  Snacks during the day

>  Unrestricted bathroom visits

> Extra time to get between classes

> Individualized physical education program

> Extra set of textbooks kept at home if carrying books between home and sc=

hool

> is too great a burden

> Elevator use

> Flexible attendance schedule Emergency Procedures: Prepare for unpredicta=

ble

> situations. If your child has a history of asthma, heat exhaustion,

> hemoptysis, bowel obstruction, or has a PICC or Port †" describe symptom=

s that can alert

> personnel when action is necessary. Provide language your child might use=

,

> such as: " My chest hurts, " " I can’t breathe, " or " I need to call home, " =

along

> with visual cues to look for †" lip and nail bed color, pallor, or a sud=

den change

> in cough. List names and phone numbers of backup people in case you canno=

t be

> reached. Always list the name(s) of your child’s physician. 

>

> Do I Have to Rewrite the Health Plan Every Year?

>

>

>

>  The Health Plan should be 

>

>

> updated at the beginning of each school year. You will again meet with th=

e

> nurse, principal, counselor, and team of teachers. Some school districts =

adhere

> to strict protocol and require a parent and the school team to meet again=

at

> the end of the school year. If your  child’s health care is complex or=

there is

> a history of noncompliance with the Health Plan, meeting throughout the y=

ear

> may be a good idea.  

>

> Transitional Milestones †" Closing the Gap 

>

>

>

>     The first milestone is when students move from elementary to middl=

e s

> chool. They become more mobile, traveling from one class to the next, and=

are

> suddenly faced with more teachers, one of whom now answers to " Coach. " Ho=

mework,

> hormones, peer pressure, and cliques also increase. Students with CF shou=

ld

> continue the process of gradually taking more responsibility for themselv=

es.

> Often they find CF must be " retaught " to new teachers, office staff, and =

a

> widening circle of friends. Some begin to shut down on talking about CF a=

t this age

> because they do not want to appear different. It’s important to the chi=

ld’s

> emotional development to feel his or her needs are acknowledged and under=

stood. 

>

>

> A second milestone is the tran-sition to high school. To hormones, homewo=

rk,

> peer pressure, and cliques, add driver’s license, dating, and perhaps a=

> part-time job. As the senior year approaches, add stress of " What do I wa=

nt to be

> when I grow up? " By the senior year, students should be primarily respons=

ible

> for their health needs, while the parents are the backup advocates.  The=

third

> major academic milestone is transitioning the student to post-secondary

> education. Many, perhaps for the first time, move to a new location, leav=

ing family

> and friends behind. This is a time when reality hits students: they are

> ultimately responsible for their health. Although it’s often difficult =

for parents to

> watch the choices they make, students should be able to express their nee=

ds

> to medical caregivers, instructors, and employers. Colleges, universities=

, and

> technical schools are required by law to provide reasonable accom-modatio=

ns to

> students with qualified disabilities or impairments, such as CF. Most

> post-secondary education institutions have an office of Student Disabilit=

y Services

> or an individual who oversees the needs of students with qualified 

> disabilities. The office acts as a liaison between the student and instru=

ctors. Not all

> students with CF feel comfortable registering with office, but registerin=

g is

> an important safety net in case a special need (such as an unexpected hos=

pital

> stay) arises during the semester. Current documentation  (within the pre=

vious

> 3 years), 

>

>

>

>

>

> CF Life/Fall 1999    9

>

> Back | Home | Next Page | Newsletter Index

>

>

>

>

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

Rosemary,

How do i get to this link, and is it good only for those that are

legally disabled according to the state(federal...whatever:)).

Tyler has never been termed as disabled although with as many

provisions as there are to be madee in school you would think its a

gimme.

Patty, mom to ty,8wcf and 2wocf

> >

> >

> > This was the link that couldn't come through..........has various

> > accommodations!

> >

> >

> > Special Accommodations: List appropriate and necessary ways to

help the

> > student manage health care while in school. These may include:

> > Extra portions of cafeteria food 

> > Unrestricted access to water

> >  Snacks during the day

> >  Unrestricted bathroom visits

> > Extra time to get between classes

> > Individualized physical education program

> > Extra set of textbooks kept at home if carrying books between

home and sc=

> hool

> > is too great a burden

> > Elevator use

> > Flexible attendance schedule Emergency Procedures: Prepare for

unpredicta=

> ble

> > situations. If your child has a history of asthma, heat

exhaustion,

> > hemoptysis, bowel obstruction, or has a PICC or Port †"

describe

symptom=

> s that can alert

> > personnel when action is necessary. Provide language your child

might use=

> ,

> > such as: " My chest hurts, " " I can’t breathe, " or " I need

to

call home, " =

> along

> > with visual cues to look for †" lip and nail bed color,

pallor,

or a sud=

> den change

> > in cough. List names and phone numbers of backup people in case

you canno=

> t be

> > reached. Always list the name(s) of your child’s

physician. 

> >

> > Do I Have to Rewrite the Health Plan Every Year?

> >

> >

> >

> >  The Health Plan should be 

> >

> >

> > updated at the beginning of each school year. You will again meet

with th=

> e

> > nurse, principal, counselor, and team of teachers. Some school

districts =

> adhere

> > to strict protocol and require a parent and the school team to

meet again=

> at

> > the end of the school year. If your  child’s health

care is

complex or=

> there is

> > a history of noncompliance with the Health Plan, meeting

throughout the y=

> ear

> > may be a good idea.  

> >

> > Transitional Milestones †" Closing the Gap 

> >

> >

> >

> >     The first milestone is when students move from

elementary

to middl=

> e s

> > chool. They become more mobile, traveling from one class to the

next, and=

> are

> > suddenly faced with more teachers, one of whom now answers

to " Coach. " Ho=

> mework,

> > hormones, peer pressure, and cliques also increase. Students with

CF shou=

> ld

> > continue the process of gradually taking more responsibility for

themselv=

> es.

> > Often they find CF must be " retaught " to new teachers, office

staff, and =

> a

> > widening circle of friends. Some begin to shut down on talking

about CF a=

> t this age

> > because they do not want to appear different. It’s

important to

the chi=

> ld’s

> > emotional development to feel his or her needs are acknowledged

and under=

> stood. 

> >

> >

> > A second milestone is the tran-sition to high school. To

hormones, homewo=

> rk,

> > peer pressure, and cliques, add driver’s license, dating,

and

perhaps a=

>

> > part-time job. As the senior year approaches, add stress of " What

do I wa=

> nt to be

> > when I grow up? " By the senior year, students should be primarily

respons=

> ible

> > for their health needs, while the parents are the backup

advocates.  The=

> third

> > major academic milestone is transitioning the student to post-

secondary

> > education. Many, perhaps for the first time, move to a new

location, leav=

> ing family

> > and friends behind. This is a time when reality hits students:

they are

> > ultimately responsible for their health. Although it’s

often

difficult =

> for parents to

> > watch the choices they make, students should be able to express

their nee=

> ds

> > to medical caregivers, instructors, and employers. Colleges,

universities=

> , and

> > technical schools are required by law to provide reasonable accom-

modatio=

> ns to

> > students with qualified disabilities or impairments, such as CF.

Most

> > post-secondary education institutions have an office of Student

Disabilit=

> y Services

> > or an individual who oversees the needs of students with

qualified 

> > disabilities. The office acts as a liaison between the student

and instru=

> ctors. Not all

> > students with CF feel comfortable registering with office, but

registerin=

> g is

> > an important safety net in case a special need (such as an

unexpected hos=

> pital

> > stay) arises during the semester. Current documentation 

(within

the pre=

> vious

> > 3 years), 

> >

> >

> >

> >

> >

> > CF Life/Fall 1999    9

> >

> > Back | Home | Next Page | Newsletter Index

> >

> >

> >

> >

> >

> > Rosemary in NY with 3 children (13, 11 and 7)

> > with CF. I have a dog named TOBI and have

> > coined the phrase " BREATHE DAMMIT "

> >

> >

> >

[Guest guest]

Hi Patty,

Here's the web link. The first page of the newsletter pops up so you'll have to

scroll down to the very bottom of the page and click

through ( " Next Page " ) to acess the article, which begins on page 7.

http://www.cfcare.com/news/cf_life/fall99/page1.htm

These accomodations are suggestions for anyone with a health impairment as

defined by the ADA. People with CF qualify becasue

CF affects " one of more " life activities (i.e., breathing, digestion, etc.).

So even though your son hasn't been " officially " labeled disabled, in certain

circumstances his need for accomodation is " a given. " In

other situations (for example, qualifying for state or federal medical programs,

SS disability payments, etc.) he may not qualify

for payments because he's too healthy.

But for educational purposes, you can think of CF as " other health impaired. "

Thus children and teens with CF are eligible for whatever

accommodations help them meet their academic goals in school. This would be true

if your child didn't have CF, but instead had for

example, health impairments such as diabetes, asthma, rheumatoid arthritis,

cancer, etc. We all tend to think of " disability " as

someone without the full use of limbs, even the government as trouble knowing

where and how to classify " disability. "

And certainly, we don't want to fit children with " labels " that may impede or

hinder their self-image. So, while Tyler qualifies for

accommodations in school, he may not need certain accommodations all the time --

only at certain times, say, if at some point he

has to go to school with a PICC line in place for a couple weeks, etc. The full

article will give you some ideas.

I wrote the article based on our personal experience working with public

schools, personal experiences of those I interviewed, and

knowledge gained from working 10 years in a counseling center at a Big 12

university. There were two offices in our counseling center

that I worked with on a daily basis: the Students with Disabilities Office and

the Office of ADA Compliance.

Laws change all the time, though education is one of the s-l-o-w-e-s-t areas to

adopt change. So though the article was published

in 1999, the info should still be pretty applicable.

Kim

(I teach in Chicago public schools)

Mom to (24 with CF and asthma) and (21 asthma no CF)

> Rosemary,

> How do i get to this link, and is it good only for those that are

> legally disabled according to the state(federal...whatever:)).

> Tyler has never been termed as disabled although with as many

> provisions as there are to be madee in school you would think its a

> gimme.

> Patty, mom to ty,8wcf and 2wocf

[Guest guest]

Kim ,

does the school nurse really have to do chest pt, and what about

inhaled albuterol thruout day.How does the dr expect us to have them

do it while theyre at school.I'm sure they dont just have pulmoaids

sitting there do they?I have never heard from the school nurse,

couldnt tell ya who they were if they were 6 inches frrom my nose.I

try to communicate everything thru teacher, which i'll add ut got

pretty jumbled for ty's 1st admit at beginning of dec.I wish there

was a msw at elementary schools so i can discuss what ty needs.I'm so

new to this as far as him needing anything out of the norm during

school hrs, he was fortunate to never have any problems

(wooooo...reality check :))

Thanks for all your help,

Patty

> > Rosemary,

> > How do i get to this link, and is it good only for those that are

> > legally disabled according to the state(federal...whatever:)).

> > Tyler has never been termed as disabled although with as many

> > provisions as there are to be madee in school you would think its

a

> > gimme.

> > Patty, mom to ty,8wcf and 2wocf

[Guest guest]

Patty,

I don't know how large Ty's school is, but check with your school

counselor to see about coordinating all this, and ask the counselor

to set you up with the nurse. Lots of schools don't have a nurse

onsite every day -- they might have to share a nurse with other

schools in the area.

As far as a nurse doing chest PT, *IF* it's written into the health

plan and *IF* your child needs it during the hours he's normally at

school (doctor prescription), then this would be an example of a

function of the school nurse. The same would apply if your child had

to have IVs run at school or a tube feeding during the day, etc.

Granted, not all nurses might want to do this and some may balk

saying there isn't enough time, manpower, etc. But again, IF it's

written into the health plan and prescribed by the doctor, then

someone has to do it -- either you go to the school daily to do it or

a designated person at the school has to do it.

The best thing parents and eductors can do is have the word " flexible "

tattooed on their foreheads. If Ty needs CPT every midmorning and you

write it in the plan to get CPT at 10:00 am, but on a certain day the

school nurse is called away on an emergency or Ty is in the middle of

a play standing on the school stage -- it's unrealistic to think

someone is going to jump to give him CPT at that time.

For example, the speech pathologist at our school drives herself nuts

running around trying to take care of all the students she's

scheduled to see each day. Teachers don't think to let her know if a

student is absent so she can advance plan her day, and rarely do

parents let her know if the student is going to be out for for

vacation or whatever.

Over the years at different schools, I've seen parents who are real

jerks about certain things. It's as if just because their child is

entitled to certain services and accommodations, then they push the

limit and brag about it. And it always seemed like it was the

students who least needed services who had the jerkiest parents,

while the students who might need the services most had the most

flexible and nicest parents. Figures, doesn't it?

My son was enrolled in the OHI plan beginning in third grade. His

school nurse was a total jerk about it. She didn't want to enroll him

at first. She said he " seemed too healthy and didn't need it. " His

third grade teacher, school counselor and I nearly choked (of course,

the principal had been called away to the phone when the nurse made

that announcement!). Sure, was " too healthy, " but at the very

least, an OHI plan should be in place in case of emergency and we

were writing up the plan so that what happened in second grade (an

emergency situation) would be in writing -- it was to cover the

school's tail, not just ensure that my previously written directives

were followed (which they had been, thank goodness!).

I'm rambling now... sorry. That's what catching up to a weeks worth

of emails and three cups of coffee will do to me.

Anyway, after you read the article and decide where Ty falls in terms

of needs, you'll know the direction. An good OHI plan is about

anticipating his needs while in school, accommodating areas where he

may need help to meet academic goals, and having a plan of action in

place in case of emergencies.

Kim

> > > Rosemary,

> > > How do i get to this link, and is it good only for those that

are

> > > legally disabled according to the state

(federal...whatever:)).

> > > Tyler has never been termed as disabled although with as many

> > > provisions as there are to be madee in school you would think

its

> a

> > > gimme.

> > > Patty, mom to ty,8wcf and 2wocf