W
We sometimees find that th
he wisest worrds come from
m those livingg with CF just like you. Th
he following p
pieces were
[Type text
t] w
written
by pa
arents
in our CF
C center based on their experiences
e
m
managing CF in school. W
We and they h
hope you find
d
tthis informatiion helpful. As
A always, thee CF team is here to answ
wer any questtions you have.
E
Educating Scchools and
Advo
ocating for Your
Y
Childre
en
Heelp! There arre other CF
studeents at my cchild’s schooll!
It is imp
portant that peoople that will bee
interactting with your child
ch on a regula
ar
basis ha
ave an understa
anding of Cystic
Fibrosiss and how it affeects your child.
Since m
my daughter beg
gan pre-school I
have goone in to talk too her teachers. I also
send hoome a letter eacch year to the
parentss of her classmattes. When she
began eelementary schoool I knew it was
as
importa
ant to have a 50
04 Plan in placee.
This enssures that my da
aughter’s needs are
met and
nd accommodati
tions are made
which gguarantee her an equal
educati
tional opportunit
ity. Everyone, fro
rom
my dau
ughter’s classroom
om teacher to the
he
school se
secretary, is awa
are of her CF and
d
that unnderstanding ma
akes everything
easier. For example, when
w
I am signing
ng
my dau
ughter in late, I know
k
that the
secretarry understands why
w my daughtter is
comingg into school latee. I don’t have to go
into a b
big explanation or
o feel
uncomffortable. With understanding
u
comes a
acceptance.
When m
my daughter enteered high school,
there w
were 3 students wit
ith CF attending
the sam
me high school. My daughter was a
freshma
an, there was a ju
unior boy and an
unknow
wn senior, all withh CF. The boy was
well knnown to us, since hhe & my daughterr
had att
ttended the same nnursery and midd
dle
school. However, we weere never totally
certainn of the senior girl’s’s identity.
In addit
ition, I visit my daughter’s
d
classrooom
at the st
start of each scho
hool year and spe
peak
to her cclassmates about
ut CF. I read a sh
hort
story ab
bout CF, explain
ning things as the
hey
relate to my daughter. I give the stude
dents
an oppo
portunity to ask questions
q
or sha
are
things in their own livess that may be
similar ((ex. some kids have
h
asthma and
d
can rela
ate to the use off a nebulizer or an
a
inhaler,, or some have been
b
hospitalized
ed
for vario
ious reasons). Th
he more children
n
understtand, the less stra
range things seem
m.
In turn, many of her cla
assmates have
becomee advocates for CF.
C I often have
ve
other pa
parents tell me th
hat their childreen
explainn CF to other peoople. It goes a step
st
further when these child
ldren come out and
a
supportt her at the Grea
at Strides walk.
Children
en genuinely likee to help one
another
er and like to feeel a part of thing
gs.
My dau
ughter loves the supports she get
ets
from heer peers!
TheImporrtanceofa50
04Plan
A5
504planisimpo
ortantbecauseiitensures
tha
atyourchild’seducationaland medical
needsaremet.Havinga504plannwill
guaranteethatyo
ourchildwillrecceivethe
acccommodationsthatwillhelpheerbe
succcessfulinthecllassroomaswelllaskeepher
saffe.Weknewweewantedourdaaughterto
beg
ginschoolwitha504planinpllace.We
approachedherellementaryschooolthespring
befforeshewastobeginkindergarrten.Toour
surrprise,weweremetwithsome opposition
fro
omtheschoolnu
urseandguidannce
cou
unselor.Sinceo
ourdaughterw
wouldonlybe
theereforahalfday
ay,theytriedtottellusshe
did
dn’tneedone.W
Weknewthatit was
importantforthissplantobeinpllaceandfelt
alllherteachersneeededtheinform
mationit
con
ntained.Itisthechild’srighttoohavea504
pla
anandwedidnotwaiver.
Ou
urdaughter’spllanincludes
acccommodationsssuchasprivate and
unlimitedbathroo
omprivileges,unnlimited
acccesstowateran
ndwhattodoinncasethere
isa
aproblemwithherg‐tube.Abssencesand
lattenessesareadd
dressedaswellaasgetting
ma
ake‐upworkina
atimelymanneer.No
mo
odificationistoo
oinsignificantttoincludein
theeplan.Puttingitinwritingenssuresthatit
mu
ustbeadheredtto.Everyteacheerthatcomes
incontactwithou
urdaughterthrooughoutthe
sch
hooldayhasaccopyofherplan..Achildmay
onlyseethephysiccaleducationteeacheroncea
aybethetimeannissuearises
weeek,butthatmay
sothatteacherneeedstounderstaandwhatis
goingonandhow
wtohelpthechilld.Themore
theeschoolstaffkn
nowsaboutCF,tthebetter
theeywillbeableto
ooffersupportaand
understanding.
Th
hisplanwillfollo
owourdaughte rthroughout
herschoolyearsa
andchangescannbemadeas
needed.Itismuch
heasiertogeta planin
pla
acewhenyourcchildisrelativelyyhealthy
tha
antotrytoputonetogetherwhhen
som
methingisgoing
gwrong.
How do
does a parent hand
dle this with the
issues of common infectioons, and HIPAA?
Firstly, it is important to have a 504 plan in
i
place, a
and specify that yo
your child should be
b
separat
ated from others thhat may have
conditio
ions that are infect
ctious to your child
d.
This inccludes keeping chiildren with CF
separat
ate from one anothher. Most
commoonly this also meanns having your
child’s oor the other child’s’s seat moved awa
ay
from soomeone who has rreturned to schooll
followinng a respiratory illllness, such as
pneum
monia.
portant to have a discussion about
It is imp
your chhild’s situation with
th the school nurse,
e,
the guid
idance counselor, tthe child study
team (w
(who sign the 504 p
plans) and the
principa
pal if necessary. Inn our case, a
discussio
ion with the nursee and guidance
counsellor was sufficient.
The schhool should make the best effort to
separat
ate students with C
CF in both time an
nd
space. D
Due to HIPAA law
ws, the
adminiistration should noot reveal names off
other C
CF students to you,
u, however they
should honor the concernns of all CF studen
nts
by sepa
arating CF student
nts in time and
space. This means not sccheduling them
togetheer for common cla
asses, and if that
must ha
happen that they b
be separated by
the ma
aximum possible d
distance (at least 6
feet). A
Additionally they sshould not be
assigned
ed to work togethe
her on group
projects
ts. It is important tto have a
discussio
ion with your stud
dent about the risk
ks
of hangging around otherr students with CF,
F,
and reiinforce hand hygieene, covering yourr
mouth,
h, etc. If my child w
was in the same
class ass another CF studeent, I would ask fo
or
a classrroom reassignmennt.
The CFF community is sma
mall; other CF
patientts are known withhin the same
commu
unity. If possible, I have found it
helpfull to discuss commoon health concernss
with thhe other CF studennt’s parents. The
other C
CF parents are usu
ually very
support
rtive and will work
k together to
protectt the health of ourr CF students.