ERIC EJ842016: Meeting Fears and Concerns Effectively: The Inclusion of Early Childhood Students Who Are Medically Fragile

2004·1 MB·English

by  ERIC

MEETING FEARS AND CONCERNS
EFFECTIVELY: THE INCLUSION OF EARLY
CHILDHOOD STUDENTS WHO ARE
MEDICALLY FRAGILE

KATHRYN G, MANCINIAND CAROL A. LAYTON,
“Texas Tech Livers

ABSTRACT

ae ahsmoes ix medion eealygy mare eats eldhcod students
‘she ave madcal Brle ave entering shoal 209 Beng ine? ing
ceded. The i of spacial actin, lack a brad resench ste
seaindeg pideion. This quabeetee study enamined he
area eine ety caleod eas: the cision of rade
lal are mada fae nthe ciasroome aes, The waders we
sentry amped aotémnaites and te conte wea anayed bk
iz fir themes. The rly chdhoal teckes xfrened n gvatal
pnt tare he inclusion of stent eho axe mia rage, bt
the det can be made a dey nes one information and amin
Sn onde o fee cerjemabls wh the wasn press. Concerns were
expnessed theoughnus nega lgetion ard Year of having te cd
wih medial Fogle characteris.

Due te eecene ekuctional tems rachel ll tal ellis ste

dents in geveral clismsarry maoty Questions lu beer aise regatlg 95
appropriate eucicwnal experietce for sults hes ane sli Fre
“The tacuson of atulents whe ace malady fragt becoutis voor vei
Jy accepted ual pronwted io Uie eelycfulbcod setciy. As ¢ wnul, east
childhowd zeachens ae focal with ee ues and cancers ra have nce pre
‘vey ler dvened. These rues widely eange fiom Fer 1a che aber?
eadluoed by eaten! Thygation and cxcinomenr egaeding 2 row challenge

29
30 prysicaL oxaaums

EDUCATION AND RELATED SERMCES

“This.qalivatioe soy exlevelcommans were hae early ehilebxod tach
en face when inckoling sudenrs we a'¢ mescally alle. Cae concelos
sre ulentiicd slong with sugestions for making che inclusion process 3
haithy aa succes experience

CHARACTERISTICS OF EARLY CHILDHOOD STUDENTS.
WHO ARE MEDICALLY FRAGILE

Omori
Students who are medically fragile hove health cave needs whicd seach,
Jeyond the necmal care of other children wha are ehe same age They bane
soko speci ent inlvalual health cane plas, cesceed by phiymctans
cael aes, ae oeguve “oe tbe day sate of the ikl Lapnhles
1992). Tome (20°03 star Pat chien who are medical rasile “reire
tse of one oF more piccss of equpmune 2 prevent death ux to terest fr
ther diab” (p, 253). Te Texan Elucation Ageucy (2020) dence ats
lenis whnvare medically fag: 6 ae those mecring ll a zh flowing erteis
The smemt muse nye fa ape from bie ro pent
2. The soulent must nave 4 sens, oruping lines ie 4 elon cemvion
at has sted a ls antelpared asta" Ieaerrehes or more months. oF
Tage cequinad ar Tenge one atomth of hospitalsition in combination with
staily, singing medical craments ood muamneurcy By appraptiatly
‘ned penoonel welt uate edule papeats ru cabot emily marehers,
3. he stent eaqeiea rhe tonne nse nf a medal device or the ue uf
sesistive echnoloxy te compensate bor the or oF uselulaes of body

fio verses icipte in acai af ily Living,
44. Tre stideor lives wich onpoing ehreat to bis ur er contol well-being
Ges states have omnia ier ha eveespoae 16 federal IDEA definitions
fo othcrdisabilicice coupled with awere ual mele: No federal category
fexhtsopeedfially for ioe sudan, Ye, che impact of severe wed
fen produces wach cancer ain :rganin from achoal perenne,
Tavly childhood eduecian frspueully elem the education of chien
‘gal ek. cag cig sear old (Bredckammp, Kanth, Kars, Sh min,
1992), The Natwscal Azteiation far the Eduestion of Youre Chiles
ARATEYC) als defines early chullve a beth checugh age cighr. They have
rtubluched guidelines concoming euvicolurs unten: mod esewment toe
carly childhul progeams saving age thves throughs eigat (Ruodekarop &
Reseatarc, 1992). The NAEYC (Bredskamp & Cepple, 1997} dstises sw

U needs
NEETING FEARS AND CONCERNS FRFECTWRYY 3

carly chilled proc. a uy sup peourna i a ete, alos oF other
Tacllcy abot serves childern tore bir rhvmgh age igh.” fens 3).

Panvtous Siam
‘Mowe of iremnite shar xvas inas heen dered tard che medherl ed an
pot dcetly to educners, Brvertaun (201! esplored the prvblem uf respi
rary eecupte aed asta ataoug alukleen wih aeecle lbotixies
Csrmoch (1992) dveasced espce rare for meicils fing children in her
arucle furs SRCH, gubled by Uie Nacznul Resume Center tor Respite
and Crit Care Servies Tn the procedang neice, the aarhar ge infona
tun on hompalsation aod achome care for meically fale children, She
ala pewied dats an esblishing > rsire progent fx the Fratie of med
ically oye calnen, we well stalig sad trator is to be conedered,
rae edicatnon wie neve sentinel i either ofthese stices asa era
ceria fr these crn,

Several cles were Hozul zegunling medical weds, yi and death,
medical recansiogy ana nasd ofthe schol (Catdell, Svs Sil Sti
Schwab, Jones, Andetion, Blanchaid & Angel, 1989, Jordan & Wein,
1996; Scn.edets & Lu, 1996) Widluo the anticle, the iawes of Eaciey!
doxth snd gre i the clamor ware discus in rslaion to sudan wlth
severe peoal needs Many people cat the death of a child with severe di
iris as a blessing rahe than a ego (Scluuvlezs & Luly, i936) This
seine can ceamplicate teucbersattermpra mae arudenrs cape with the
Tove af a logan. To tbe eal chibhowd setring, preschoolers aiten sce

ddeata os comettng akin so slosp thar ie» tengucory state Scunelens and
Tardy (1996) desorbed three eypsunns of sri fomnd im eden: ppsicas,
behavional, ané emorional. Emavwral sseaptozs devsnibe the inten
espenves ofthe child, Behavioral sparen ate versal ative al sa:
rons, aad phgsical spraponms ade thove that atest fody fictions. The
‘brs coucluske tbe the teacher must come 15 eens with his or her sea,
fealings sown death, ac wel eeate & comfortable ake envircninent fo
Une tule to expres feelings of rit

Shoe! aif members need i hare eucyeaey proto each and ane
rv chacklirs ana 1eam al pmafeszonal Enawedceab-e abone a sudan with
mavival needs reudly available (Peendeveaee, 1995}. Adwouce prepanution,
sand conatane estamanicatian weit Gare a vially auporeane to dhe ee
‘sisal edcarian of rhe, ch ee from Gwinnett County ches
located varie Atheva, Georgi sugested the fortatin of a Masa
Review Pavel (MRE). This Medical Review: Pon aval ldresbecleh ancl
esp ious in dhe Gwinnerr Cover y schuele (Jemfan & Weintath, 1996)
32 PHYSICAL OWABEITIS EOUCATION AND RF ATED SERVICES

When astudene rqcived specific specinian! heal cane they suggested chat
saTveult var teun be uted for tat child. This aan belie care
team wold he responsible fur sobering the tsi of rexaor nel and per
formance of rocedares for dared. Cheesy aay fr leveling
Tovliidunbied reales Care Plan were Iocardy a well ae specie gunlelige
for peacedmncs sch 36 whe feeding ated dilgets (Coldoell ct al. 1999)
Meslcul technologies, such as cube Fosding, inane lint, cha mete
tinene carhetersatinn, ostoray applinnccs, disse, and respiratary devices
rere lsd se the most sommen rings teyuael by sets wilt severe
seal needs (Culdweit eta, 1999)

‘Tre American Pederson ol Iechiens (1992) provided a policy for tia
tog schoo’ emplagees ra wrk stn madicaly agile ehiklet 0 thea wel
ty Lut offered wo suguestions or el for personnel. Scare literanas, which
includes puicelines,ecommesulatianys inal udiomnal epurts uf previous espe
riences, could he locarod regreding the incl af sles whus ae re
ically fgie in a early chllhood setring, Thic wae expecially te raging
sary childhon’ teachers petoepaons sar the vacuseye af sults with,
sovere medical nesds, In many ennmanttis,edueatia.peageamns fo zhi
den sed ve aed under ae net pubkele operated, which limits opin for
inchwian (Cavallare, Falled-Resa 6 1y0eb, 1998). West af dhe esata
found ceqnding teachers! re-cepeicns dea‘ solsly wit slemenmary sudenrs
ox econdary scucents {MeDonnell, Thosur. MeQuivey & Kiefer
ODeoaelh, 1997; Sralth & Seah, 2000)

INCLUSION

Demon
Leyatly, the IEPs of all wodents with cise: ane required to describe the
extent to which chey will rt he participating in general sducution (IDEA,
1991, For many students wi dlsabilices, the amifcatinna include Rein
incorpenitel into general education, am ty the rwinwnn extent posible,
‘educaced with amdents io do not hve disabifes. Curershy, this concept
ls seen sbscub the Implemeneuon af meson, rhe. placement af amidente
swith disabihries sll ge art-ior mwrhene n geitaedca eon elretoame
(Hume & Gocts, 1997), The wim of inchaion eo provide for euch eld
sevigment thar waists ehabilitaioy forts and hae the Ighes el
ability of remedying exadenic deicte (Satter. 2001), Incluseat advocotes
promors the philosophi thc students with disaliris nsed to apend as much
NEETING FEARS AND CONCERNS ERRECTWELY 33

cof the day ax possible fv a eel slasrunun. Tochasion dace not ter eo the
physical plasetven, of cusdents in a general lass-ewn. Rather, i efers to the
aoneprarse and sense of helonging that. emidene with special esd experi-
scot when plied i. @ general lasseiom (Vides, Brasil & Ford. 2001),
‘Stainburk, Souinbock vou Ayres (1996) state thut the gook ef til ielosion
“rnesmparares rhe idea rat all ssl desares to he afar. secure, ana
acca Innes within che enasarenm’ (p39),

‘Wibom (1999) uddeeses the face thut the inclusion wf stunts wl
cvere calves whw are medically fagleremalne pry oomneavenea ie

inthe fel of edvearin. Smdents canserol severely disabled and medical
by faye rerain che Jest likely to be include in he pencral wlcation clas
room, but a sul cra Las Lege: to incieave iclasion of Us popula
uring Fhe 1996-1907 school pene, 443 of srudanrs entific with severe
Sissiltos were edceated in a scpacare class, and soother 30% were cuca:
‘ed in w sepurite school, resident fuility, hospital, or the home (Tornbull,
Turon, Shank, Sou & Led, 2002). The remaining 2686 were often
included in very limited general eduearion siarsone, such ata iste and
Theme econsmics. In Tadan (August 2002), the Conpet! for Bx
Childien explored ony tends randy inclusion. They deetued that ve
Tenor were necesaey 15 emake ihe inclusion of anes with special needs
saeossuls 11 Schaok focusing em ccacher abilicig co mndlfy and. make
aeconpnudations 2) the engagement of co-tcackings 3) a variety of oda
tiooal sieges; 4) plannlig te for teachers: 5) sal the acceptance of
Giferent, non-rypical tle hy the sesches. These chartersties shoul
extend 1 the nes of tudenes whe are alan wostialy fragile

‘Salem vorwadered metal tape are increasing in numbers 2¢ med
lea testments and interveutins Uecaue usore seve (Bowe, 20021 Tr,
the pust, these soudents were eften annwiderad “unedcable® becoute they
were tet strupy enungh t attend sehool or lacked hearey jena stems,
‘Asa ras they were offen educa a¢ hoinebound auslents, Advance in
romlical tecbaolugy have allowed “hess spudents fonger life apa mid
increased opportunities for julie education (isses, Schifint Se Bowman,
1994; Schnieles & Lav, 1996), The emphasis on inclusion as expanded
the opportunity of se abd spproptine acti whee east veatric-
rive ervitenmenr;this In tuim hyseveated winesat of an uproar inthe edu

ional

eaters eceeomunity ato how to bert mect the educations] rs
sadents while provecring shir healeh sanue
34 PHYSICAL DISABILITIES: EOUCATION ANC RELATED SERVICES

Limparion
Litigation vogading smedents who are modicaly rails con inst eens
fs studeuts enter the general education setting, Tae uve cf Cader Raids
Connmanrg Sciol Phsnce . Garret B (IW, vase New J6-U295) bral
u f chs Insaco

tases to che foot und ie considera
sckaion af seaically Taple salaus Gaye K aged spatul calumca
finery wher be seas ime years Ie and wwe dependent on 3 ventharor far Me
supp fa 1983, Greret! mtbr el cheer shivelctries ts ase Brae

‘ial ceeprmafsiliy for she heal care revices Chast nose hte the
sehool day. anal the ste dented tke request, The United Stes Supreme
Court ited thar under the Individcals with ieiliries Felucarion Ast
(IDEA, 1897), ongoing, one-um-one medtesL cue for & sasdent who is ud
ically Fxgile ne Roconsicsls whe evi nabs pore ye loool
sys 0 that che uct can enefic fim: schuol (Walsh, 1999). Sires
(Gayeret cal we rpg «phase 29 atest ha es Use services el
nc he eled “inecal sevice” hich could he exchided under che seh
clisttice’s eeguned proewion Before Us ey. sa sale hua severe ue
teal needs har could noch met che sehac! nurs or personnel, £3s chao)
cbstrc: could efuse tae stents etry or che busts chat it sould net provide
aalauate otal vr rig

A similar ene went af

he Supreme Conn repay vlan sevice:
vs tuecheut cervioes Caeterzatiom ve the ante sersige 22 ston i
leon Trdepeadin School Dist w, Tit (1984, cass No. 8-558), Amber
“Ta, 8 years ll war child wet soy biel, seule wwe le orb
plc coal peel Fepammens, anda neuragénie Blader (Ratelyanns &
Yall, 2900). in aver ea wevane dameye ro ae bids, che need a proce
dae called Ce Tet eninateon Cashuticatian (CC) setorred every three 1
fourrhiran. The school distsiet provided special elucacon services et Au
bout they refusal pind he CIC: services. The Supreme Char raed
the Ck service wat a eects tor Aanber toute slo! vn! benefit for
Tat elation. Since rained p pathe: chan medical personel eve
provi the secvive Gell ate the seppemred servis caepore and shel]
Ihe provided by the schol sists This cae wos sctumetad in aie on,
Tecauie iv ewrablished the stundond chat servis ane ty be glee! yp he
toro disutif uy shen base 32 penovmed bya physician, I phys
‘ate necesany, Ue actin distent 4 respanath 6

Ta de cae of Nevo. rabid Loy Sebaale (1995), a seven year ol
child, Samana Nealy bea rate condition chat cans ditfculy brewing
and required a cracaesstony, Samant teyorel eonetant monstading and
acral suctioning of che machewweomny «¢ cavure thie de tube did aot
MEETING FEARSANO CONCERNS EFFECTIVELY 35,

become blacked or at ler breatbung xine nor hindered, Sno pene
raqesied shen a allan noe or eeepistty cate peofessonal hired hy
thee schon] citret tn atend e9 Samant nso, The ebwel set Fall
Tw agreed 0 euploy tae proce tqaesred, Pt hired an individual ach
nig a naming asitints lisenee “This allan 66 ro prow ds care fer
imcrrba and male revisions es tui, Saat each eet fo het
Saowuleah paren abjecsed and removed Sansnocha fra: sebew!. The cate
seis evexcualy caken tothe Sib Ciuit Courrf Apposle, which rele that
Samana’ reused services were tov eadsasive ual sample Gu the seo
flamer fo provide; nd thas fll wndor che "ruical vervizes” deCelon oF
Lbs. wwore net consider “relate semvees” which,
could bs akaistered Ly sey rst proetsional, she schoo! direc was ot
responsible for powviding the necesecyeaecal versie. The ase nde rhar
‘he reqcired cave pred mace Earth die ‘Lhas eave lle 9
sliferaniate bess “rood serrece” ara "medical servis and helps
fehool distncte unline wlan servings ete appropriate, Since Samanea
required conceame medial aren und won aot leks che wboot peo
cr vorvigs, hs Cone rsd chat cho school dicrit was rst responsible for
<ateyng the burg af her medial ext
“The nrulcctnn of there cante aie satan, Seba duties and ape
sil education sonces are eyporsibh for he education wall eiug oF st
dene: sho are modicsy ese, noe nccoserly fer ahve malic wel. boing.
Ag Teatenes 1 emt decisions, sich ae fe Taree case (19881, rulings sot
‘lean prove foe paowaiuag extensive ae appeoadate cre 9: sche and by
school personnel when choy ae ved fr the student to be educurse These
medical and physieal demands make mary reaching personnal tel fade
gente and unptogansl, Cat Ragide . Caves F (1999) de.ived elate
eee" Laey are psesautly seen public wlueativo. asking ease ao sue
‘hut ad sen very aes to educa. Athusagh thes: casey bese! services
to be provided inthe clemonraryseeicg foe atdcoes who ate emedicaly fag
ila, ther did noe aos enc childhs ews, 901 uotiy pening 4
(yohilllival owhiag lent with special

rich areal hb

PURPOSE OF STUDY

“Ths poupnee of tha eal was to eaatsne the
cescly ckidhod gemenal edacarien reaches regia eh inchiwon
dent: cansidered medical fsple. Kane early cb ihacd teachete ms
various experiances with stadeons Idaclad medier's fingile pote aeeed

spins an eons!
36. 2HFSICAL DISABILITIES EDUCATION AND RELATED SERVICES

anawret five questions, ‘ine teachers voluateered to answer the questions, na
their wletites were kept amonuzos. The questions pereained ro che teach
crs cxpericnces feclingy, and cancatne raiding the inclusion of wetcally
Tingle srs,

The fous of the sculy yas te understand erly childhood toxcher!
oowlelke, emotions, snd goals with and resmrd medicals fraile rederts
being placed in their aacooms. Although including spatial neds auderns
swith general a alents va frequent acerence, very litle reseach iavatable
cw bly teachers ancl aduinisteton face and deal with che peroeptions
involved regarding the inclasion process of smadents who ae medically fs
ie. Preconceived moans, fics, an Tal of knveledge can pres haves
fe bath doe teachers andl selon, ‘The extent ane type of macary wal
prepatation for general and specia: education ceachersisalso a grave concern,
‘Ala lacking ate daa rogrd ng che. feiarian encauragemenr sn collabo:
rile betwere general anal special mation vavher, sneeoulaly 19 che
col; chitdhood seeing. Pexbars, most imoorcandy, knowlege eeneming
helping bork special aad genera! education students secosd eagecher in the
eneal laacoin is glaiglywbsont. Tanney & Sell, 1997)

RESEARCH QUESTIONS,

“Ther adres che falling questions, which were asked of mine ely

childbul genetal educedloo reaches

1. Wat chamsceertice wou! you sy cleine tafe wha i aeled med
ieally agile”

2. Have yu. over had ang conract with a amdent who is considered med
scaly eagle? Iw, wat ase vente

3, How did yuu feel abou: the auseat?

low wouid yn fel above having « mnelialy Fragile ewlene rated in

ont cheers fal cal

Wha won bs yauccenceenssbout including uracil file suet

ay yur clsstoem?

SETTING

“Teachers were early cbs, general education ranchers who exugheon an
ccxcusiveprekindergareen coarse ayn ope: age AN
ing that che tolling had sw inter alle. The chases wede upon and ean-
nested, with forimace ing dhe unly divider between caemis,[Lwa-a public
MIETING FEARSAND CONCERNS GFECTIGLY 37

cel caildbucal Head Se failcg for dance wa fue years, and was an
inclu. cams Studcens wik cil ts wnderste diahilities were included
firme i che yeneral chasis. The campus held one sel-camtuine pe
sil alneaann clare wich teacher ant easstaa. This clasteor eon
Fines smadents witn mare severe chaliizes Mar ofthe seudonts in this
clase were al inclined ln the goal elascaoms duzing salle: portions of
fhe dey A room of rss iackanion facilzatry uel ust veoching assstanes
rocked with chile with spasial needs aswell an with che clara teach
fresh prome inclusion and ensue ts sucoe. A Starlet Supparr Team on
the etapa net repubaly tu dhvare vuceens abou unidentified susdcoes mod,
ler suggesrins forthe clasooom teackun.

METHOD

Cast Stupy
A case study deslgn. yas chosen aller tho socarcher en wether in cept,
‘raphic and focused iocormation sbuae a paruculsz ypulcnen—generl ely
chuldbuel eduction ervey fed with she challenge ef including medica
Te fragile enaleons in thot claetemine. The case rudy method enabled tke
te erlestan! how the teuches operate and (unctiso (Betg,
Saudy Resecch Tesi and Metinde (Vir, 1994) defines a cane
sendy as"an crapincalinqeiy chat inveeates a contemporary phen
wuts real hfe cutest geval wie te baudaries between the ws
arc not clearly evident” (page 13) Turchsr, “The care seul as & research
seutegy comprises an al eovompssing meod sath the logic of desu
rening ape aprpenaches ty data calles ina and io data analysis

(aye 239
“The case study method ie syteratic sof looking ac war is happen
ing, collectoy dato. analyng formation. und reportio che results (Daven,
1991}, Te ovamings soramewalines and paerlewlvseg about a €a9 bul Ee

end result wuully Seplay something shat i mcomenen. Case staies dia
fiom the fallowing: the nanare of che ease, Phe cases hitcvieal bnckarannd,
the physoal aren, ane caker came sles economae- palit, legal,
sou zesthecic feet (Seice, 2000), An advantage of using the ease sty
snethod Tesi alte tp open he wae foe now disceweers (Reng, 2001)
Tivexarune washers percept ls nn ioebudng sweaty Agile stents an
iionimentul cise stody was elecesd because che design & ilustacive,
escriptive in nam, and lerde faci tn chs tps a informarin argh.
38 PHYSICAL DISABUTIES EDUCATIONAND RELATED SERVICES
Cash Spy Deskin
‘The iatravarnal vow sty denn fr use to anders online perspec:
tives (Stake, 1995). Ir looks aca pacicclar cane ard exarnes it malady 7
sve snaghr inca aun ot “elarmulte 4 geverabzatiy (Sabe, 7030) The
‘ast itelf snot the tain focus of the resarch queition—it simply give
cag, Ut Us save sly evel
teachers provided spite infomarion mo give init intr a bigger pera:

Infnassao tea Usa vo cewek

the perspectives of ety chiller veaclone wh hase enone ssusey
considered medically fags tx heir classtooms Tho maces who eelun.

tered.» paticyate wete ie peces Jou autsinute te the uvenll puke af
‘nchasien of tadeats who are mde y fn

‘The Wustraive, wr desanptive spect fe crstrumectal care sey ati
Tiss citeusntances ca shar hata sation i ke, Mlaszeive cass sradice
sre Wel when ltele is known abut te subpect being reesicie Hey ely
inegprer eee dar, saree ro make ee unfamiliar more familie, and sive the
reseers a commen langage uboue the topse éLaney, 199°),

Prncrrai
TDi tote the aay ehilhood ranches wee eeMccsed throug a steuccused
interview method, Serwctoned interviews wee piven i a questionaire fo
anal 19 eash teacaet Bach teacher received exaer duplicates of che Blan
‘lesionnaire. Teachers provided their opinions wiuntaniy. aad were giver
ro cme Gixte with which te cowplene the 6

DATA ANALYSIS

DData collected an thik stesly seme auelyeed fom a ancial anshenpolosical
anpinich, Resoarchens who ace irene i ee Eehunscant gecealtee 2°
_everydeylie use tis ayseach: lag. age and language ve, reas srl ere
monet, and sclationshipe (Berg, 2001). hoe atpnech slenifies apd
topline low pak: a opstasing bv a pariular enemies han ty
cunderstal une tars 99 thew dae-7 ay aeriees,

Syawustion Meracn
Diaa were evaluates] usr consent analysis wich an icleceive gpach. That
alloyed total auntie ine rhesrmcnired anstionntirefacerviews a une
fo Menta mania theres Indycrve ramegtion ere deesloped, which
allowed the Tickage, or grounding of the cateporiss ty che dat tesca wich
they weve taken (Beng, 200:), Coment analysis invelved dhe eoundig of