ed 383 162 ec 303 996 author krajicek, marilyn j., ed.; steinke, … · 2014. 7. 18. · document...
TRANSCRIPT
-
DOCUMENT RESUME
ED 383 162 EC 303 996
AUTHOR Krajicek, Marilyn J., Ed.; Steinke, Geraldine D.,Ed.
TITLE The National Conference on Developing Policy andPractice To Implement I.D.E.A. Related to InvasiveProcedures for Children with Specia' Health CareNeeds (Denver, Colorado, August 6-7, 1994). Summaryof Proceedings.
INSTITUTION Colorado Univ. Health Sciences Center, Denver. Schoolof Nur-;ng.
SPONS AGENCY Offic f Special Education and RehabilitativeServices (ED), Washington, DC. Div. of PersonnelPreparation.
PUB DATE 95CONTRACT H0129K30189NOTE 185p.PUB TYPE Collected Works Conference Proceedings (021)
EDRS PRICE MF01/PC08 Plus Postage.DESCRIPTORS *Ancillary School Services; Change Strategies; Child
Advocacy; 'Compliance (Legal); Delivery Systems;Early Childhood Education; Educational Legislation;Elementary Secondary Education; Federal Lcgislation;Inclusive Schools; Legal Responsibility; *MedicalServices; *Nursing; School Responsibility; *SpecialHealth Problems
IDENTIFIERS *Individuals with Disabilities Education Act
ABSTRACTThis document includes summaries of papers and
discussions presented at the first of three federally supported,national conferences on the development of policy and practices toimplement the Individuals with Disabilities Education Act related toinvasive procedures for children with special health care needs.Emphasis is on the interdisciplinary discussion of issues by specialeducators, lawyers, physicians, nurses, ethicists, paraprofessionals,health finance professionals, and parent advocates. Individualsessions with multiple presenters addressed the following topics:medical and legal issues; quality of care (structures that allow forsafe and legal delegation); issues in special education (inclusion);issues of ethics, advocacy, and funding; systems change (how toinfluence policy making); challenges for the future and funding; andthe creation of action plans. Extensive appendices include a list ofspeakers, addresses of advisory group and board members, speakerhandouts, an annotated bibliography, reprinted articles, and orderinginformation for the Model Nurse Practice Act. (DB)
***********************************************************************
Reproductions supplied by EDRS are the best that can be madefrom the original document.
***********************************************************************
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MIL
U.S
. DE
PA
NT
NIE
NT
OF
ED
UC
AT
ION
Offi
ce o
t Edu
catio
nal R
esea
rch
and
Impr
ovem
ent
ED
UC
AT
ION
AL.
RE
SO
UR
CE
S IN
FO
RM
AT
ION
CE
NT
ER
(E
RIC
/
0 T
his
docu
men
t has
bee
n re
prod
uced
as
rece
ived
bor
n th
e pe
rson
Or
orga
niza
tion
orig
inat
ing
ItC
l Min
or c
hang
es h
ave
been
mad
e to
impr
ove
repr
oduc
tion
qual
ity
Poi
nts&
vie
w o
r op
inio
ns s
late
d in
this
doc
u-m
ent d
o no
t nec
essa
rily
repr
esen
t offi
cial
OE
RI p
ositi
on o
r po
licy
(III)
Alai°
A A AL AL AL AL Ai A
AL AL AL A AL AL A A AL A A AL
Al. AL Ai AL It AL AL AL Ak AL A A
A
PRO
CE
ED
ING
S O
F T
HE
NA
TIO
NA
L C
ON
FER
EN
CE
ON
DE
VE
LO
PIN
G P
OL
ICY
AN
D P
RA
CT
ICE
TO
IM
PLE
ME
NT
I.D
.E.A
. RE
LA
TE
D T
O I
NV
ASI
VE
PRO
CE
DU
RE
S FO
R C
HIL
DR
EN
WIT
H S
PEC
IAL
HE
AL
TH
CA
RE
NE
ED
S
YV
VV
VV
YY
YV
YV
VV
VV
VV
VV
VV
VV
VV
YV
VV
Y
2
Uni
vers
ity o
f C
olor
ado
Hea
lth S
cien
ces
Cen
ter
Scho
ol o
f N
ursi
ng3
BE
ST
CO
PY
AV
AIL
AB
LE
-
A S
UM
MA
RY
OF
TH
E
PRO
CE
ED
ING
S O
F T
HE
NA
TIO
NA
L C
ON
FER
EN
CE
ON
DE
VE
LO
PIN
G P
OL
ICY
AN
D P
RA
CT
ICE
TO
IM
PLE
ME
NT
I.D
.E.A
.
RE
LA
TE
D T
O I
NV
ASI
VE
PR
OC
ED
UR
ES
FOR
CH
ILD
RE
N W
ITH
SPE
CIA
L H
EA
LT
H C
AR
E N
EE
DS
Edi
ted:
Mar
ilyn
J. K
rajic
ek, E
dD, R
N, F
AA
NG
eral
dine
D. S
tein
ke, P
hD
Aug
ust 6
- 7
, 199
4
Den
ver,
Col
orad
o
Spon
sore
d by
the
Uni
vers
ity o
f C
olor
ado
Hea
iil. S
cien
ces
Cen
ter
Scho
ol o
f N
ursi
ngW
ith S
uppo
rt f
rom
the
U.S
. Dep
artm
ent o
f E
duca
tion
Pers
onne
l Pre
para
tion
Spec
ial P
roje
ct H
0129
K30
189
Polic
y &
Pra
ctic
eU
nive
rsity
of
Col
orad
o H
ealth
Sci
ence
s C
ente
rSc
hool
of
Nur
sing
Cop
yrig
ht19
95 U
nive
rsity
of
Col
orad
o H
ealth
Sci
ence
s C
ente
rSc
hool
of
Nur
sing
AC
KN
OW
LE
DG
ME
NT
S
We
grat
eful
ly a
ckno
wle
dge
the
supp
ort o
f U
.S. D
epar
tmen
t of
Edu
catio
n Pe
rson
nel
Prep
arat
ion
(Spe
cial
Pro
ject
H02
9K30
189)
,s
wel
l as
the
cont
ribu
tions
of
the
follo
win
gin
divi
dual
s w
ho s
erve
d as
Pro
ject
Adv
isor
s ar
..1, i
n so
me
case
s, a
lso
as s
peak
ers:
Ms.
Vic
tori
aH
erte
l, M
arjo
rie
Lon
g, E
sq.,
Dr.
Pat
rici
a M
otz,
and
Ms.
Mar
ie S
wig
ert (
all m
embe
rs o
f th
ePo
licy
and
Prac
tice
Loc
al A
dvis
ory
Gro
up),
as
wel
l as
the
man
y ad
ditio
nal m
embe
rs o
f th
epr
ojec
t's N
atio
nal A
dvis
ory
Gro
up in
clud
ing
Ms.
Joy
ce D
evan
ey, M
s. J
an F
lem
ing,
Dr.
Edw
ard
Gol
dson
, Ms.
Jud
ith I
goe,
Ms.
Dor
is L
ucke
nbill
, Ms.
Dor
is N
ay, D
r. W
endy
Neh
ring
, Dr.
Sal
lyPh
illip
s, M
s. J
ulia
Plo
tnik
, Dr.
Bet
ty P
res
ler,
Dr.
Pat
Row
ell,
Dr.
Ann
Sm
ith, M
s. J
oSh
acke
lfor
d, a
nd M
r. D
avid
Sto
ckfo
rd.
We
also
exp
ress
our
app
reci
atio
n of
the
prof
essi
onal
con
trib
utio
ns o
f ou
r sp
eake
rs (
not
alre
ady
nam
ed a
bove
) in
clud
ing:
Ms.
Jul
ie B
ecke
tt, M
s. K
athl
een
Bre
ndza
, Mr.
Jim
Car
lisle
,M
s. R
ethe
a Fo
rdyc
e, M
s. M
ary
Ann
e H
arve
y, M
s. M
ary
Hic
ks, M
s. K
it H
ovey
, Ms.
Ash
ley
Hov
ey, D
r. C
lair
Mar
tin, D
r. B
rian
McN
ulty
, Dr.
Joh
n N
acka
shi,
The
Hon
orab
le P
atri
cia
Schr
oede
r, D
r. F
red
Smok
oski
, Dr.
Kay
o Su
nada
, and
Dr.
Mar
k Y
arbo
roug
h; a
s w
ell a
s of
proj
ect c
onsu
ltant
s in
clud
ing
Drs
. San
dy L
arso
n, C
aro
lie C
oate
s an
d D
on S
o ltz
.
Man
y th
anks
als
o to
the
Polic
y an
d Pr
actic
e pr
ojec
t sta
ff m
embe
rs w
ho la
bore
d lo
ng a
ndha
rd in
eve
ry v
arie
ty o
f ta
sk: M
s. J
enni
fer
Bur
nham
, Ms.
Pat
Fin
nell,
Ms.
Mic
helle
Ste
in, M
r.N
orm
Tor
rey,
and
Mr.
Rod
eric
k W
old,
and
par
ticul
arly
Ms.
Eile
en R
ollo
in th
e co
mpi
latio
n,po
lishi
ng, p
rodu
ctio
n an
d di
stri
butio
n of
this
doc
umen
t.
And
, fin
ally
, we
ackn
owle
dge
with
hea
rtfe
lt gr
atitu
de M
s. V
irgi
nia
Tor
rey,
with
out w
hose
limitl
ess
com
mitm
ent a
nd s
kills
ther
e w
ould
hav
e be
en n
o Po
licy
and
Prac
tice
proj
ect.
Mar
ilyn
J. K
rajic
ek, E
dD, R
N, F
AA
Nan
dG
eral
dine
Ste
inke
, Ph.
D.
Edi
tors
-
PRE
FAC
E
Sinc
e th
e m
id 1
970s
, inc
lusi
on h
as b
een
issu
e of
nat
iona
l con
cern
and
atte
ntio
n. D
urin
gth
e sa
me
peri
od a
dvan
ces
in m
edic
ine
have
ena
bled
the
surv
ival
and
incr
ease
d m
obili
ty o
fch
ildre
n w
ho a
re m
edic
ally
fra
gile
or
depe
nden
t upo
n te
chno
logy
. As
thes
e yo
ung
child
ren
are
pres
ente
d fo
r ad
mis
sion
to p
ublic
sch
ool a
nd c
hild
car
e pr
ogra
ms,
spe
cial
edu
cato
rs, g
ener
aled
ucat
ors,
child
care
pro
vide
rs, a
nd p
aren
tsar
ein
crea
sing
lych
alle
nged
to m
eet a
nun
prec
eden
ted
arra
y of
hea
lth c
are
need
s.Y
et, a
s co
sts
esca
late
and
fun
ds f
or e
duca
tion
and
child
car
e be
com
e sc
arce
r, th
e on
-site
nur
se b
ecom
es a
n in
crea
sing
rar
ity.
Thu
s, w
hile
acco
mpl
ishi
ng th
eir
prim
ary
mis
sion
s of
edu
catio
n an
d ch
ild c
are,
adm
inis
trat
ors,
edu
cato
rs(s
peci
al a
nd g
ener
al),
chi
ld c
are
prov
ider
s an
d pa
rapr
ofes
sion
als
mus
t add
ress
a g
row
ing
num
ber
of c
ompl
ex h
ealth
car
e ne
eds
amon
g th
eir
char
ges.
Are
Sch
ools
of
Spec
ial E
duca
tion,
and
pro
gram
s ed
ucat
ing
thos
e w
ho s
erve
thes
e ch
ildre
nan
d th
eir
fam
ilies
, pre
pari
ng th
eir
grad
uate
s to
add
ress
spe
cial
hea
lth c
are
need
s in
a s
afe
and
lega
l man
ner?
Do
curr
icul
a in
edu
catio
n an
d ea
rly
child
car
e ad
dres
s co
mpl
ex h
ealth
issu
es,
fede
ral l
aws
rela
ted
to c
hild
ren
with
spe
cial
nee
ds, a
nd s
tate
law
s (s
uch
as N
urse
Pra
ctic
e A
cts)
that
may
eith
er h
inde
r or
fac
ilita
te c
ompl
ianc
e w
ith f
eder
al la
ws?
It is
incu
mbe
nt u
pon
Scho
ols
of S
peci
al E
duca
tion
and
prog
ram
eng
aged
in p
re-s
ervi
ceed
ucat
ion,
trai
ning
, or
cont
inui
ng e
duca
tion
of th
ose
serv
ing
to c
hild
ren
and
fam
ilies
to e
nsur
eth
at th
eir
stud
ents
are
ale
rted
to th
e co
mpl
ex is
sues
con
cern
ing
child
ren
with
spe
cial
hea
lth c
are
need
s.St
uden
ts m
ust b
e m
ade
awar
e of
:(a
) th
e ri
ghts
of
the
child
ren
unde
r fe
dera
l law
s to
rece
ive
free
and
app
ropr
iate
pub
lic e
duca
tion
in th
e le
ast r
estr
ictiv
e en
viro
nmen
t pos
sibl
e (e
.g.,
IDE
A, A
DA
), (
b) th
e na
ture
of
inva
sive
hea
lth c
are
proc
edur
es r
equi
red
by s
ome
youn
gch
ildre
n, (
c) th
e co
nditi
ons
for
safe
pro
visi
on o
f th
ese
proc
edur
es, (
d) th
e le
gal s
tatu
s in
thei
rst
ate
of d
eleg
atio
n an
d su
perv
isio
n of
nur
sing
task
s to
non
-hea
lth li
cens
ed in
divi
dual
s (N
urse
Prac
tice
Act
s), a
nd (
e) r
elat
ed is
sues
of
agen
cy a
nd p
erso
nal l
iabi
lity.
Issu
es o
f et
hics
,ad
voca
cy, s
yste
ms
chan
ge, f
undi
ng, a
nd f
utur
e ch
alle
nges
are
als
o ge
rman
e, e
spec
ially
to th
ose
wor
king
in, o
r as
piri
ng to
, adm
inis
trat
ive
role
s in
ser
vice
s fo
r ch
ildre
n.
As
the
firs
t in
a se
ries
of
thre
e fe
dera
lly s
uppo
rted
, nat
iona
l con
fere
nces
, the
fol
low
ing
Proc
eedi
ngs
of th
e ^9
4 C
onfe
renc
e do
cum
ents
the
inte
rdis
cipl
inar
y di
scus
sion
of
thes
e is
sues
by s
peci
al e
duca
tors
, law
yers
, phy
sici
ans,
nur
ses,
eth
icis
ts, p
arap
rofe
ssio
nals
, hea
lth f
inan
cepr
ofes
sion
als,
and
par
ent a
dvoc
ates
of
child
ren
with
spe
cial
nee
ds.
It a
lso
pres
ents
mod
els
and
reso
urce
s fo
r th
e sa
fe a
nd le
gal i
mpl
emen
tatio
n of
ID
EA
rel
ated
to in
vasi
vehe
alth
car
epr
oced
ures
for
you
ng c
hild
ren.
ii
TA
BL
E O
F C
ON
TE
NT
S
WE
LC
OM
ING
RE
MA
RK
S
Cla
ir M
artin
, PhD
, RN
, FA
AN
4M
arily
n IC
rajic
ek, E
dD, R
N, F
AA
N4
WH
Y W
E A
RE
HE
RE
: Med
ical
and
Leg
al I
ssue
s
MO
DE
RA
TO
R: M
arjo
rie
Lon
g, J
D
Bri
an M
cNul
ty, P
hDC
olor
ado:
A S
tate
Per
spec
tive
5
John
Nac
kash
i, Ph
D, M
DW
ho A
re T
he C
hild
ren?
7
Vic
tori
a H
erte
l, R
N, M
SSc
hool
Hea
lth S
ervi
ces
10
Mar
jori
e L
ong,
JD
Bas
ic C
ivic
s R
evie
w: B
ranc
hes
of G
over
nmen
tan
d T
heir
Res
pect
ive
Func
tions
1 I
Mar
y H
icks
One
Fam
ily's
Exp
erie
nce
with
Inc
lusi
on12
Ope
n D
iscu
ssio
n13
QU
AL
ITY
OF
CA
RE
:T
he S
truc
ture
that
Allo
ws
for
Safe
and
Leg
al D
eleg
atio
n
MO
DE
RA
TO
R: W
endy
Neh
ring
, RN
, PH
D
Bet
ty P
resl
er, R
N, P
hDW
hat D
oes
Nur
sing
Bri
ng to
the
Car
e of
Chi
ldre
n w
ith S
peci
al H
ealth
and
Dev
elop
men
t Nee
dsin
Sch
ools
and
Ear
ly I
nter
vent
ion
Setti
ngs?
15
Vic
tori
a H
erte
l, R
N, M
SSt
atew
ide
Focu
s18
Patr
icia
Mom
EdD
, RN
CD
eleg
atio
n in
the
Den
ver
Publ
ic S
choo
ls19
Ret
hea
Ford
yce
Del
egat
ion:
A P
arap
rofe
ssio
nal P
ersp
ectiv
e22
Ope
n D
iscu
ssio
n23
iii
-
LU
NC
HE
ON
SPE
AK
ER
S
MO
DE
RA
TO
R: M
arily
n K
rajic
ek, E
dD, R
N, F
AA
N
Sally
Phi
llips
, RN
, PhD
Rep
ort f
rom
the
Nat
iona
l Cou
ncil
of S
tate
Boa
rds
of N
ursi
ngT
he H
onor
able
Pat
rici
a Sc
hroe
der
The
Fut
ure
of H
ealth
Car
e2424
ISSU
ES
IN S
PEC
IAL
ED
UC
AT
ION
: IN
CL
USI
ON
MO
DE
RA
TO
R: F
red
Smok
oski
, EdD
Kat
hlee
n B
rend
zaA
Mod
el P
rogr
am f
or I
nclu
sion
25
Dav
id S
tock
ford
The
Rol
e of
Spe
cial
Edu
catio
n in
Inc
h, io
n26
Fred
Sm
okos
ki, E
dDIm
plem
entin
g In
clus
ion:
A S
tate
wid
e Pe
rspe
ctiv
e27
Ope
n D
iscu
ssio
n28
ISSU
ES
OF
ET
HIC
S, A
DV
OC
AC
Y, F
UN
DIN
G
MO
DE
RA
TO
R: M
arie
Sw
iger
t, R
N, M
S
Kay
o Su
nada
, MD
The
Con
sequ
ence
s of
Eth
ical
Dec
isio
nsM
arie
Sw
iger
t, R
N, M
SE
thic
s an
d A
dvoc
acy
for
the
Scho
ol N
urse
Mar
y A
nne
Har
vey
Rec
ent D
ecis
ions
Rel
evan
t to
Spec
ial N
eeds
Chi
ldre
nM
ark
Yar
boro
ugh,
PhD
Inte
rest
s an
d O
blig
atio
ns in
Pro
vidi
ng f
or C
hild
ren
with
Spe
cial
Hea
lth C
are
Nee
dsO
pen
Dis
cuss
ion
SYST
EM
S C
HA
NG
E: H
ow to
Inf
luen
ce P
olic
y M
akin
g
MO
DE
RA
TO
R: P
atri
cia
Mot
z, E
dD, R
NC
Patr
icia
Row
ell,
RN
, PhD
Syst
ems
Cha
nge:
AN
A P
ersp
ectiv
eD
avid
Sto
ckfo
rdE
duca
tion
Ref
orm
it
John
Nac
kash
i, Ph
D, M
DG
uide
lines
to E
nlis
ting
Phys
icia
n Su
ppor
t for
Sys
tem
s C
hang
e37
Kit
Hov
ey a
nd A
shle
y H
ovey
Fost
erin
g a
Dre
am f
or th
e C
hild
with
Spe
cial
Hea
lth C
are
Nee
ds38
Ope
n D
iscu
ssio
n39
CH
AL
LE
NG
ES
FOR
TH
E F
UT
UR
E/F
UN
DIN
G:
Dis
sem
inat
ion
and
Tra
inin
g/Fu
ndin
g R
esou
rces
MO
DE
RA
TO
R: M
arily
n K
rajic
ek, E
D, R
N, F
AA
N
Jim
Car
lisle
Cha
nges
in P
rovi
der
and
Paye
r Sy
stem
s Im
pact
on
Res
ourc
es,
Acc
ess
and
Del
iver
y of
Hea
lth C
are
Serv
ices
for
Spe
cial
Nee
ds C
hild
ren
40
Jo S
hack
elfo
rd, R
N, M
PH, M
AT
rain
ing/
Fund
ing/
Res
ourc
es:
Wha
t will
you
nee
d?43
Julie
Bec
kett
51
Ope
n D
iscu
ssio
n52
CR
EA
TIN
G A
CT
ION
PL
AN
S: D
iscu
ssio
ns a
nd P
robl
em S
olvi
ng53
SUM
MA
RY
RE
MA
RK
S
Mar
ilyn
Kra
jicek
, EdD
, RN
, FA
AN
54
28A
PPE
ND
ICE
SA
ppen
dix
A31
App
endi
x 13
App
endi
x C
32A
ppen
dix
DA
ppen
dix
EA
ppen
dix
F33
App
endi
x G
35A
ppen
dix
HA
ppen
dix
IA
ppen
dix
JA
ppen
dix
KA
ppen
dix
LA
ppen
dix
MA
ppen
dix
N35
App
endi
x 0
App
endi
x P
36A
ppen
dix
Q
-L
ist o
f Sp
eake
rs-
Polic
y an
d Pr
actic
e Pr
ojec
t Adv
isor
y G
roup
- N
atio
nal C
ounc
il of
Sta
te B
oard
s of
Nur
sing
-Po
licy
and
Prac
tice
Abb
revi
atio
n L
ist
-Po
licy
and
Prac
tice
Res
ourc
e T
able
-Sp
eake
r H
ando
ut: R
. For
dyce
and
P. M
otz
-Sp
eake
r H
ando
ut: V
. Her
tel
-Sp
eake
r H
ando
ut: M
. Lon
g-
Spea
ker
Han
dout
:J.
Nac
kash
i-
Spea
ker
Han
dout
:S.
Phi
llips
- Sp
eake
r H
ando
ut:
S. P
hilli
ps a
nd M
. Kra
jicek
-Sp
eake
r H
ando
ut:
B. P
res
ler
-Sp
eake
r H
ando
ut:
J. S
hack
elfo
rd-
Spea
ker
Han
dout
: D. S
tock
ford
-A
nota
ted
Bib
liogr
aphy
: NE
CT
AS
Res
ourc
es-
Rep
rint
ed A
rtic
les
- M
odel
Nur
se P
ract
ice
Act
: Ord
erin
gIn
form
atio
n
-
LIS
T O
F T
AB
LE
S
TA
BL
ES
IIn
tere
sts
and
Obl
igat
ions
in P
rovi
ding
for
Chi
ldre
nw
ith S
peci
al H
ealth
Car
e N
eeds
34
2C
apita
tion
Rev
erse
s th
e L
ogic
41
i uvi
i1
e
-
As
part
of
a th
ree-
year
spe
cial
pro
ject
to p
rovi
de in
form
atio
nto
sta
te a
nd lo
cal
com
mun
ities
abo
utth
e de
velo
pmen
t of
the
appr
opri
ate
polic
y,pr
actic
e, a
nd tr
aini
ngop
port
uniti
es n
eede
d to
impl
emen
t the
Ind
ivid
uals
with
Dis
abili
ties
Edu
catio
n A
ct (
IDE
A)
asre
late
d to
inva
sive
hea
lth c
are
proc
edur
es th
e fi
rst N
atio
nal C
onfe
renc
e on
Dev
elop
ing
Polic
yan
d Pr
actic
e to
Im
plem
ent I
DE
A R
elat
ed to
Inv
asiv
e Pr
oced
ures
for
Chi
ldre
n w
ith S
peci
alH
ealth
Car
e N
eeds
was
hel
d in
Den
ver,
Col
orad
o, o
n A
ugus
t 6-
7, 1
994.
The
con
fere
nce
attr
acte
d sp
eake
rs a
nd a
ttend
ees
from
17
stat
es, w
ho r
epre
sent
ed m
ultip
le d
isci
plin
es a
nddi
vers
e le
vels
of
resp
onsi
bilit
y fo
r po
licy
defi
nitio
n an
d im
plem
enta
tion.
The
pur
pose
s of
the
Con
fere
nce
wer
e to
add
ress
issu
es o
f aw
aren
ess,
liab
ility
, and
the
need
for
trai
ning
and
dis
sem
inat
ion
in th
e im
plem
enta
tion
of I
DE
A r
elat
ed to
inva
sive
hea
lthca
re p
roce
dure
s. M
ore
spec
ific
ally
its
obje
ctiv
es w
ere
to
incr
ease
aw
aren
ess
of s
tate
lead
ersh
ip p
erso
nnel
of
the
need
to e
xam
ine
lega
lob
ligat
ions
and
con
stra
ints
, the
ir u
nder
stan
ding
of
wha
t the
spe
cial
hea
lth c
are
need
sar
e fo
r in
fant
s an
d yo
ung
child
ren
with
com
plex
med
ical
nee
ds, a
nd th
eir
reco
gniti
onof
inte
rage
ncy
coop
erat
ion
need
s to
ser
ve th
is s
peci
al p
opul
atio
n in
mai
nstr
eam
setti
ngs;
exam
ine
and
set f
orth
app
ropr
iate
law
s, r
egul
atio
ns, a
nd s
tand
ards
for
saf
e de
lega
tion
of n
ursi
ng ta
sks
to n
on-h
ealth
pro
fess
iona
ls a
nd p
arap
rofe
ssio
nals
; and
prov
ide
trai
ning
mod
els
and
diss
emin
ate
proc
eedi
ngs
and
reso
urce
gui
de to
pro
vide
notif
icat
ion
of a
vaila
bilit
yof
trai
ning
topr
epar
epe
rson
nel
for
safe
,le
gal
adm
inis
trat
ion
of m
edic
ally
inva
sive
pro
cedu
res.
Bac
kgro
und
Med
ical
and
hea
lth-r
elat
ed te
chno
logi
cal a
dvan
ces
pres
erve
the
lives
of
man
y ch
ildre
n w
how
ould
not
hav
e su
rviv
ed 2
0 ye
ars
ago
(Koh
rman
, 199
2).
How
ever
, man
y of
the
surv
ivin
gch
ildre
n ha
ve m
edic
ally
com
plex
nee
ds a
nd r
equi
re in
vasi
ve h
ealth
car
e pr
oced
ures
as
part
of
thei
r da
ily li
ves.
Fede
ral l
egis
latio
n m
anda
tes
that
all
child
ren,
incl
udin
g ch
ildre
n w
ith s
peci
al h
ealth
car
ene
eds
(CSH
CN
), r
ecei
ve f
ree
and
appr
opri
ate
publ
ic e
duca
tion
(FA
PE)
in th
e le
ast r
estr
ictiv
een
viro
nmen
t (L
RE
) po
ssib
le. S
o th
at h
ealth
sta
tus
does
not
ser
ve a
s an
obs
tacl
e to
inte
grat
ion
of C
SHC
N w
ith th
eir
peer
s, th
e re
late
d se
rvic
es r
equi
red
by C
SHC
N m
ust b
e pr
ovid
ed.
Cha
rged
with
impl
emen
ting
the
Publ
ic L
aws
and
amen
dmen
ts s
uch
as I
ndiv
idua
ls w
ithD
isab
ilitie
s E
duca
tion
Act
(ID
EA
), d
ay c
are
prog
ram
s an
d pu
blic
sch
ools
are
incr
easi
ngly
chal
leng
ed to
edu
cate
chi
ldre
n w
ith c
ompl
ex m
edic
al a
nd h
ealth
-rel
ated
nee
ds w
ho r
equi
rein
vasi
ve h
ealth
car
e pr
oced
ures
suc
h as
cle
an in
term
itten
t cat
hete
riza
tion
and
G tu
be f
eedi
ng.
Whi
le in
vasi
ve h
ealth
car
e pr
oced
ures
are
typi
cally
reg
arde
d as
nur
sing
task
s, d
ay c
are
and
educ
atio
n se
tting
s m
ay la
ck r
esou
rces
and
app
ropr
iate
ly tr
aine
d an
d cr
eden
tiale
d pe
rson
nel t
ope
rfor
m th
e re
quir
ed p
roce
dure
s.M
oreo
ver,
law
s at
the
stat
e le
vel,
such
as
Nur
se P
ract
ice
Act
s, m
ay c
ompl
icat
e or
exp
licitl
y pr
ohib
it th
e de
lega
tion
and
supe
rvis
ion
of th
e re
quir
ed ta
sks
to n
on h
ealth
-lic
ense
d pe
rson
nel.
2
Sinc
e th
e ch
ildre
n w
ill b
e in
crea
sing
ly p
rese
nt, t
he d
eliv
ery
of s
afe
and
lega
l car
e is
an
issu
e of
par
amou
nt n
atio
nal i
mpo
rtan
ce th
at w
ill b
e re
solv
ed in
the
evol
utio
n of
pol
icy
and
prac
tice
on th
e st
ate
and
loca
l lev
els.
Tho
se r
espo
nsib
le f
or d
efin
ing
and
impl
emen
ting
polic
ym
ust:
(a)
unde
rsta
nd th
e di
vers
e ne
eds
of te
chno
logi
cally
dep
ende
nt a
nd m
edic
ally
fra
gile
child
ren;
(b)
add
ress
app
licab
le s
tate
and
fed
eral
law
s; (
c) r
ecog
nize
the
uniq
uene
ss o
f se
rvic
ene
twor
ks a
cros
s st
r as
and
with
in lo
calit
ies;
(d)
ada
pt to
dif
fere
ntia
l fun
ding
mec
hani
sms
for
the
prov
isio
n of
ser
vice
s; (
e) a
ckno
wle
dge
and
inco
rpor
ate
inte
rdis
cipl
inar
y co
ncer
ns; a
nd (
f)ad
dres
s no
rmat
ive
and
cultu
ral e
xpec
tatio
ns o
f fa
mili
es r
ecei
ving
the
serv
ices
.
Con
fere
nce
Des
ign
Bur
rian
(1
1de
scri
bes
polic
y as
a d
ynam
ic, e
volv
ing
phen
omen
on e
nmes
hed
inne
twor
ks o
f re
late
d ac
tiviti
es -
- a
"mac
rode
cisi
on"
(p. 9
5) r
esul
ting
from
a f
orm
al o
r in
form
alm
ulti-
deci
sion
pro
cess
. Thi
s pa
radi
gm is
par
ticul
arly
app
licab
le to
the
impl
emen
tatio
n of
ID
EA
rela
ted
to in
vasi
ve p
roce
dure
s w
here
pol
icy
deve
lopm
ent i
n m
ultip
le d
omai
ns o
verl
ap in
an
ongo
ing
proc
ess.
Tho
se c
harg
ed w
ith d
efin
ing
and
impl
emen
ting
polic
y in
one
dom
ain
may
disc
over
thei
r de
cisi
ons
conf
lict w
ith th
ose
from
oth
er d
omai
ns, i
nclu
ding
law
, eth
ics,
tech
nolo
gy, h
ealth
, edu
catio
n, a
nd c
hild
adv
ocac
y.T
hus,
the
firs
t Pol
icy
and
Prac
tice
Con
fere
nce
was
des
igne
d fr
om a
n in
terd
isci
plin
ary
pers
pect
ive
repr
esen
ting
rele
vant
pol
icy
area
s to
iden
tify
the
para
met
ers
and
prov
ide
exam
ples
for
pol
icy
deve
lopm
ent,
prac
tice
guid
elin
es, a
nd tr
aini
ng o
f pe
rson
nel i
n th
e pe
rfor
man
ce o
f in
vasi
ve p
roce
dure
s fo
r C
SHC
N.
To
this
end
, the
Con
fere
nce
sess
ions
add
ress
ed
med
ical
/lega
l iss
ues;
the
stru
ctur
e th
at a
llow
s fo
r sa
fe a
nd le
gal d
eleg
atio
n;is
sues
in s
peci
al e
duca
tion
- in
clus
ion;
issu
es o
f et
hics
, adv
ocac
y, f
undi
ng;
syst
ems
chan
ge; a
ndch
alle
nges
for
the
futu
re.
Fina
lly, u
tiliz
ing
brea
kout
ses
sion
s pa
ralle
ling
the
foca
l top
ics
of th
e pa
nel a
nd d
iscu
ssio
ngr
oups
, par
ticip
ants
had
the
oppo
rtun
ity to
des
ign
indi
vidu
aliz
ed A
ctio
n Pl
ans.
The
pla
nsde
scri
bed
part
icip
ant-
defi
ned
obje
ctiv
es a
nd s
trat
egie
s fo
r ac
hiev
ing
inno
vativ
e ap
proa
ches
tost
ate
and
natio
nal i
ssue
s af
fect
ing
the
impl
emen
tatio
n of
ID
EA
rel
ated
to in
vasi
ve p
roce
dure
s.
Not
es to
the
Rea
der
As
note
d pr
evio
usly
, inv
asiv
e he
alth
car
e pr
oced
ures
are
gen
eral
ly r
egar
ded
as n
ursi
ngta
sks.
The
ir p
erfo
rman
ce in
day
car
e an
d sc
hool
set
tings
bro
aden
s th
e is
sue
to in
terd
isci
plin
ary
stat
us in
volv
ing
(am
ong
othe
rs)
adm
inis
trat
ors,
edu
cato
rs, e
arly
chi
ldho
od in
terv
entio
nist
s,ph
ysic
ians
, nur
ses,
par
apro
fess
iona
ls, a
nd c
hild
adv
ocat
es, a
s w
ell a
s pa
rent
s. W
hile
man
y of
thes
e di
vers
e pe
rspe
ctiv
es v
ere
rep
rese
nted
in th
e C
onfe
renc
e pa
nel a
nd d
iscu
ssio
n se
ssio
ns,
the
over
all f
ocus
was
saf
e an
d le
gal p
erfo
rman
ce o
f in
vasi
ve h
ealth
car
e pr
oced
ures
.
Pare
nts
are
the
best
teac
hers
.n c
onve
ying
thei
r ow
n ch
ildre
n's
need
s an
d pr
efer
ence
s.H
owev
er, t
o m
inim
ize
risk
s to
the
safe
ty o
f th
e ch
ildre
n, a
s w
ell a
s to
min
imiz
e ag
ency
and
I .1
-
3
pers
onal
liabi
lity,
the
dele
gatio
n of
per
form
ance
of
inva
sive
pro
cedu
res
to e
duca
tors
and
para
prof
essi
onal
s m
ust b
e do
ne in
col
labo
ratio
n w
ith p
aren
ts a
nd a
pro
perl
y lic
ense
d he
alth
prof
essi
onal
, in
acco
rdan
ce w
ith p
reva
iling
pra
ctic
e la
ws
and
regu
latio
ns.
Onc
e sa
fely
and
lega
lly d
eleg
ated
, the
issu
e of
mon
itori
ng o
ngoi
ng a
dher
ence
to e
stab
lishe
d pr
oced
ures
for
perf
orm
ance
of
inva
sive
hea
lth c
are
proc
edur
es b
ecom
es c
ritic
al. A
s th
e nu
mbe
r of
chi
ldre
nre
quir
ing
dive
rse
inva
sive
pro
cedu
res
incr
ease
s in
edu
catio
nal a
nd d
ay c
are
prog
ram
s,th
e ri
sks
of p
robl
ems
and
liabi
lity
will
als
o es
cala
te.
It is
ther
efor
e es
sent
ial t
hat p
olic
y m
aker
s an
dpr
ovid
ers
of e
duca
tion,
ser
vice
s an
d ca
re a
re k
now
ledg
eabl
e ab
out t
he is
sues
and
acco
unta
ble
for
thei
r de
cisi
ons
and
beha
vioi
.
Max
imal
inte
grat
ion
of c
hild
ren
with
spe
cial
hea
lth c
are
need
s w
ith th
eir
peer
sre
quir
es
crea
tion
and
exec
utio
n of
pol
icie
s an
d pr
oced
ures
to p
erm
it sa
fe a
nd le
gal
dele
gatio
n.T
his
requ
ires
up-
to-d
ate
know
ledg
e of
the
appr
opri
ate
law
s an
d as
soci
ated
reg
ulat
ions
,an
d w
here
appl
icab
le, a
men
dmen
t of
Nur
se P
ract
ice
Act
s th
at p
rohi
bit d
eleg
atio
n.A
lso
requ
ired
isid
entif
icat
ion
of a
ppro
pria
te p
eopl
e an
d re
sour
ces
to d
isse
min
ate
polic
y an
dpr
actic
e kn
owle
dge
on th
e st
ate
leve
l and
, on
the
loca
l lev
el, t
ote
ach
cont
ent r
egar
ding
the
perf
orm
ance
of
spec
ific
proc
edur
es.
Rea
ders
are
enc
oura
ged
to u
tiliz
e th
e re
sour
ces
of th
eir
stat
e bo
ards
of n
ursi
ng,
scho
ols
of n
ursi
ng, a
nd s
tate
and
loca
l hea
lth d
epar
tmen
ts, a
s w
ell a
s re
sour
ces
note
d in
thes
ePr
ocee
ding
s, to
acq
uire
and
mai
ntai
n st
ate-
and
loca
lity-
spec
ific
info
rmat
ion
onth
ese
issu
es.
Stru
ctur
e of
the
Proc
eedi
ngs
The
bod
y of
thes
e Pr
ocee
ding
s is
org
aniz
ed b
y se
ssio
n, in
clud
ing
pres
ente
r-au
thor
ed
pape
rs o
r ab
stra
cts,
con
fere
nce
pres
enta
tion
sum
mar
ies
(mer
ging
sev
eral
sta
ff r
ecor
ders
not
es),
or a
ugm
ente
d ab
stra
cts
(pre
sent
er-a
utho
red
outli
nes
inte
grat
ed w
ith c
onfe
renc
e pr
esen
tatio
nsu
mm
arie
s). R
epor
ts o
f pr
esen
tatio
ns a
re f
ollo
wed
by
a sy
nops
isof
the
Ope
n D
iscu
ssio
n th
at
follo
wed
eac
h gr
oup
of p
rese
ntat
ions
.
The
App
endi
ces
to th
e Pr
ocee
ding
s in
clud
e sp
eake
r ha
ndou
ts, o
rw
here
thos
e ha
ndou
ts
coul
d no
t be
feas
ibly
rep
rodu
ced,
ann
otat
ed b
iblio
grap
hies
and
info
rmat
ion
on a
cces
sing
the
mat
eria
ls d
irec
tly f
rom
the
from
the
spea
ker.
Als
o in
clud
ed is
the
Polic
y an
d Pr
actic
e R
esou
rce
Tab
le a
nd O
rder
ing
Info
rmat
ion,
pre
pare
d by
con
fere
nce
staf
f.
R ;f
eren
ces
Bur
rian
, B. (
1989
). P
olic
y pr
oces
s fr
amew
ork:
A s
yste
ms
appr
oach
to p
olic
y de
velo
pmen
t.
Jour
nal o
f A
llied
Hea
lth, 9
5-99
.
Koh
rman
, A. F
. (19
92).
Med
ical
tech
nolo
gy:
Impl
icat
ions
for
hea
lth a
nd s
ocia
l ser
vice
prov
ider
s.In
N. J
. Hoc
hsta
dt &
D. M
. Yos
t (E
ds.)
. The
Med
ical
ly C
ompl
ex C
hild
(pp
.
3-13
). N
ew Y
ork:
Har
woo
d A
cade
mic
Pub
lishe
rs,
14
4
Aug
ust 6
, 199
4
WE
LC
OM
ING
RE
MA
RK
S
SPE
AK
ER
:C
lair
Mar
tin, P
hD, R
N, F
AA
ND
ean
and
Prof
esso
r, U
nive
rsity
of
Col
orad
o Sc
hool
of
Nur
sing
As
part
of
a th
ree-
year
spe
cial
pro
ject
to p
rovi
de in
form
atio
n to
sta
te a
nd lo
cal
lie q
ilso
cial
cha
nge,
incl
udin
g te
chno
logi
cal a
dvan
ces
and
econ
omic
cha
nges
, tha
t now
cha
ract
eriz
eou
r so
ciet
y m
ake
itdi
ffic
ult f
or h
uman
ser
vice
s pr
ovid
ers
to f
ollo
w e
arlie
r pr
actic
es in
antic
ipat
ing
soci
ety'
s ne
eds.
The
rap
id r
ate
of s
uch
chan
ges
ofte
n de
man
ds a
ctio
n be
fore
polic
ies
and
guid
elin
es a
re a
vaila
ble
to g
uide
dec
isio
n-m
akin
g.
Incl
usio
n of
chi
ldre
n w
hose
spe
cial
hea
lth c
are
need
s re
quir
e in
vasi
ve p
roce
dure
s is
cle
arly
one
such
are
a w
here
the
dem
and
for
actio
n ou
tpac
es th
e es
tabl
ishm
ent
of p
olic
ies,
reg
ulat
ions
and
guid
elin
es. T
here
fore
, thi
s Po
licy
& P
ract
ice
Con
fere
.-ce
is a
n im
port
ant e
ffor
t to
supp
ort
pare
nts,
edu
cato
rs, a
nd h
ealth
car
e pr
ovid
ers
stru
gglin
g to
res
olve
con
flic
ting
syst
ems
and
requ
irem
ents
for
the
bene
fit o
f th
e ch
ildre
n.(S
taff
sum
mar
y)
SPE
AK
ER
:M
arily
n K
rajic
ek, E
dD, R
N, F
AA
NPr
ojec
t Dir
ecto
r, P
olic
y an
d Pr
actic
e to
Im
plem
ent I
DE
AA
ssoc
iate
Pro
fess
or, U
nive
rsity
of
Col
orad
o Sc
hool
of
Nur
sing
The
pur
pose
of
this
con
fere
nce
is to
foc
us o
n ch
ildre
n w
ith s
peci
al h
ealth
car
ean
d
educ
atio
nal n
eeds
. The
con
fere
nce
evol
ved
from
eff
orts
beg
un in
198
5, w
ith D
r. A
nnSm
ith,
to e
xplo
re th
e pa
rapr
ofes
sion
al m
odel
, mor
e sp
ecif
ical
ly tr
aini
ngpa
rapr
ofes
sion
als
in c
hild
car
e
cent
ers
and
earl
y ch
ild e
duca
tion
setti
ngs.
Ori
gina
l fun
ding
was
fro
m a
Per
sonn
el P
repa
ratio
ngr
ant f
rom
the
US
Dep
artm
ent o
f E
duca
tion
to p
ursu
e co
nten
tre
late
d to
inva
sive
pro
cedu
res
in p
rogr
am e
ntitl
ed F
irst
Sta
rt.
Initi
al e
ffor
ts to
add
ress
inva
sive
pro
cedu
res
wer
e ch
alle
nged
by
the
Col
orad
o A
ttorn
eyG
ener
al o
n th
e gr
ound
s th
at te
achi
ng in
vasi
ve p
roce
dure
s to
par
apro
fess
iona
lsvi
olat
ed th
e
Col
orad
o N
urse
Pra
ctic
e A
ct.
Tea
chin
g as
a te
am in
oth
er s
tate
s, D
rs. S
mith
and
Kra
jicek
cont
acte
d ot
her
Stat
e B
oard
s of
Nur
sing
and
fou
nd th
at v
iola
tion
of th
eir
Nur
se P
ract
ice
Act
s
was
als
o lik
ely.
So, c
onte
nt r
elat
ed to
inva
sive
pro
cedu
res
was
rem
oved
fro
m th
e Fi
rst S
tart
curr
icul
um d
urin
g th
e pe
riod
198
6-19
92.
A s
tate
wid
e C
olor
ado
task
for
ce, c
hair
ed b
y M
arie
Sw
iger
tan
d in
clud
ing
seve
ral
conf
eren
ce p
artic
ipan
ts, c
hter
rnin
ed th
at, a
s w
e ap
proa
ch f
ull i
mpl
emen
tatio
nof
ID
EA
, the
impl
icat
ions
of
this
issu
e ex
tend
bey
ond
nurs
ing.
IDE
A, a
s it
rela
tes
to in
vasi
ve p
roce
dure
san
d th
e w
elfa
re o
f th
e ch
ildre
n,is
equ
ally
the
conc
ern
of e
duca
tors
, par
apro
fess
iona
ls,
adm
inis
trat
ors,
hea
lth c
are
prov
ider
s, p
aren
ts a
nd o
ther
con
cern
ed p
artie
s.
-
56
With
in th
e fr
amew
ork
of im
plem
entin
g in
clus
ion
amid
st th
e en
viro
nmen
t of
heal
th c
are
Ove
rall,
I w
ould
sug
gest
that
we
are
expe
rien
cing
a s
hift
in th
e m
odel
of
how
we
serv
ice
refo
rm, t
he C
onfe
renc
e w
ill
iden
tify
issu
es th
at m
ust b
e ex
amin
ed f
or in
clus
ion;
addr
ess
prov
ider
s' le
gal r
espo
nsib
ilitie
s; a
ndad
dres
s St
ate
law
s re
gard
ing
earl
y ch
ildho
od in
terv
entio
ns.
The
con
fere
nce
will
not
ans
wer
all
of th
e qu
estio
ns.
It w
ill p
roba
bly
rais
e m
ore
ques
tions
than
it a
nsw
ers.
Thu
s, th
e C
onfe
renc
e w
ill r
aise
proc
ess
issu
es f
or p
rovi
ding
hig
h qu
ality
car
eto
chi
ldre
n w
ith s
peci
al h
ealth
car
e an
d ed
ucat
iona
l nee
ds a
nd th
eir
fam
ilies
.It
is o
ur h
ope
that
your
par
ticip
atio
n w
ill e
nabl
e ea
ch o
f yo
u to
take
bac
k to
you
r st
ate
both
info
rmat
ion
and
anag
enda
to f
acili
tate
an
inte
rdis
cipl
inar
y di
alog
ue a
mon
g he
alth
and
edu
catio
n pr
ovid
ers
and
pare
nts.
(Sta
ffsu
mm
ary)
WH
Y W
E A
RE
HE
RE
: Med
ical
and
Leg
al I
ssue
s
MO
DE
RA
TO
R: M
arjo
rie
Lon
g, J
DA
ttorn
ey a
t Law
, Leg
al C
onsu
ltant
SPE
AK
ER
:B
rian
McN
ulty
, PhD
Ass
ista
nt to
the
Com
mis
sion
erC
olor
ado
Dep
artm
ent o
f Edu
catio
n
Col
orad
o: A
Sta
te P
ersp
ectiv
e
Whi
le P
L 9
4.14
2 w
as p
asse
d in
197
5, it
was
not
unt
il 19
86 th
at P
L 9
9-45
7 w
as p
asse
dby
the
U.S
. Con
gres
s. T
his
was
in p
art d
ue to
the
fact
that
so
few
ear
lych
ildho
od p
rogr
ams
and
serv
ices
wer
e av
aila
ble
and
that
ther
e w
as n
ot a
con
stitu
ency
larg
een
ough
to e
ffec
t thi
s
chan
ge.
Now
that
we
have
PL
94
457
and
have
man
date
d se
rvic
es f
or 3
-5 y
ear
old
child
ren
with
disa
bilit
ies
(Sec
tion
619)
and
are
mov
ing
tow
ards
ful
l ser
vice
s fo
r in
fant
san
d to
ddle
rs (
Part
1-1)
, wha
t sho
uld
we
do d
iffe
rent
ly?
Wha
t hav
e w
e le
arne
d ov
er th
e pa
st 2
0 ye
ars?
Wha
t
serv
ices
sho
uld
we
prov
ide
and
how
and
whe
re s
houl
d th
ey b
epr
ovid
ed?
1 w
ould
like
to p
ropo
se th
at w
e ra
dica
lly r
edes
ign
our
serv
ice
syst
em in
a w
ayth
at b
ette
r
mee
ts th
e ne
eds
of c
hild
ren
with
dis
abili
ties
and
thei
rfa
mili
es. W
hile
not
bei
ng a
ble
to g
o in
to
grea
t det
ail h
ere,
I w
ould
pro
pose
two
maj
orco
nsid
erat
ions
:
1.T
he s
ervi
ce d
eliv
ery
mod
el m
ust b
ecom
e m
ore
fam
ily f
ocus
ed a
ndfa
mily
dir
ecte
d.
2.T
he s
ervi
ces
mus
t be
prov
ided
in th
e m
ost n
atur
al s
ettin
gs p
ossi
ble.
child
ren
with
dis
abili
ties
and
thei
r fa
mili
es. S
peci
fica
lly th
is in
volv
es f
our
maj
or c
ompo
nent
s:
1.M
ovem
ent a
way
fro
m th
e "m
edic
al"
or "
disa
bilit
y" m
odel
to a
n "a
bilit
y" m
odel
. Rat
her
than
foc
usin
g on
def
icits
, we,
inst
ead,
sho
uld
be b
uild
ing
on s
tren
gths
and
abi
litie
s th
atth
e ch
ild a
nd th
e fa
mily
hav
e.T
his
shif
t als
o m
eans
inte
grat
ing
our
serv
ices
into
mor
ena
tura
listic
set
tings
and
not
pro
vidi
ng s
epar
ate
"spe
cial
edu
catio
n on
ly"
prog
ram
s.
2.M
ovem
ent a
way
fro
m te
ache
r di
rect
ed in
terv
entio
ns to
chi
ld in
itiat
ed a
nd d
irec
ted
serv
ices
. The
who
le m
ove
shou
ld b
e to
war
ds d
evel
opm
enta
lly a
ppro
pria
te p
ract
ices
" th
atar
c ag
e ap
prop
riat
e.W
hile
thes
e pr
actic
es a
re p
reva
lent
in ty
pica
l ear
ly c
hild
hood
setti
ngs,
they
nee
d to
be
the
norm
for
all
child
ren.
3.M
ovem
ent a
way
fro
m d
isci
plin
e sp
ecif
ic in
terv
entio
ns to
mor
e ho
listic
mul
tidis
cipl
inar
yin
terv
entio
ns a
nd s
uppo
rts.
Kid
s do
n't c
ome
in p
arts
and
sho
uldn
't be
vie
wed
or
serv
edas
if th
ey d
id.
Thi
s is
sue
beco
mes
mos
t evi
dent
whe
n w
e lo
ok a
t pro
vidi
ng s
ervi
ces
-in
mor
e na
tura
l set
tings
.
4.M
ovem
ent a
way
fro
m a
foc
us o
n th
e ch
ild to
a f
ocus
on
the
fam
ily.
Fam
ilies
are
ecol
ogic
al s
yste
ms.
If w
e in
terv
ene
in a
ny p
art,
we
affe
ct th
e en
tire
syst
em. W
e m
ust
incr
ease
our
aw
aren
ess
and
unde
rsta
ndin
g of
how
to s
uppo
rt f
amili
es in
way
s th
at th
eyse
e as
hel
pful
.
In C
olor
ado
we
have
trie
d to
add
ress
thes
e is
sues
thro
ugh
a "v
alue
-bas
ed"
deci
sion
mak
ing
mod
el. T
he s
tate
inte
rage
ncy
coun
cil d
evel
oped
a s
et o
f va
lues
or
guid
ing
prin
cipa
ls to
ass
ure
that
we
supp
orte
d on
ly in
itiat
ives
that
mov
ed u
s to
war
ds o
ur v
isio
n. T
hese
val
ues
incl
uded
:
Chi
ldre
n an
d fa
mili
es a
re v
alue
d fo
r th
eir
uniq
ue c
apac
ities
,ex
peri
ence
s, a
nd
pote
ntia
l.
Fam
ilies
hav
e th
e ri
ght a
nd r
espo
nsib
ility
to m
ake
deci
sion
s on
beh
alf
of th
eir
child
ren
and
them
selv
es.
Com
mun
ities
are
enh
ance
d by
rec
ogni
zing
and
hon
orin
g th
e di
vers
ity a
mon
gal
l
peop
le.
Fam
ilies
mak
e th
e be
st c
hoic
es w
hen
they
hav
e co
mpr
ehen
sive
info
rmat
ion
abou
tth
e
full
rang
e of
for
mal
and
nat
ural
res
ourc
es in
thei
r co
mm
uniti
es.
Cre
ativ
e, f
lexi
ble
and
colla
bora
tive
appr
oach
es to
ser
vice
s al
low
for
indi
vidu
al c
hild
,
fam
ily, a
nd c
omm
unity
dif
fere
nces
.
Whe
n th
e co
unci
l iss
ued
requ
ests
for
fun
ding
, the
y tr
ansl
ated
thes
eva
lues
and
sta
ted
that
prop
osal
s w
ould
be
fund
ed w
hich
use
natu
ral s
ettin
gs a
s th
e pr
imar
y lo
catio
n fo
r pr
ovid
ing
serv
ices
and
sup
port
s;
-
7
prov
ide
optio
ns f
or f
amili
es in
term
s of
the
type
s of
ser
vice
s an
d su
ppor
ts to
be
rend
ered
;
deve
lop
with
fam
ilies
Ind
ivid
ualiz
ed F
amily
Ser
vice
s Pl
ans
(IFS
P) th
at r
efle
ct m
ore
than
just
the
serv
ices
and
sup
port
s av
aila
ble
thro
ugh
the
prov
idin
g ag
ency
;
dem
onst
rate
ser
vice
coo
rdin
atio
n w
ill o
ccur
acr
oss
agen
cy li
nes;
dem
onst
rate
inno
vativ
e w
ays
to u
se c
urre
nt la
ndin
g to
acc
ess
gene
ric
serv
ices
; and
dem
onst
rate
link
ages
with
info
rmal
sup
port
s.
Res
earc
h fi
ndin
gs r
elat
ed to
thes
e is
sues
wer
e pr
esen
ted
and
futu
re d
irec
tions
wer
edi
scus
sed.
(Pre
sent
er a
bstr
act)
SPE
AK
ER
:Jo
hn N
acka
shi,
PhD
, MD
Ass
ocia
te P
rofe
ssor
, Ale
.:!:;a
l Dir
ecto
rPe
diat
ric
Car
e C
oord
inat
ion
Prog
ram
and
Ped
iatr
ic H
ome
Car
eU
nive
rsity
of
Flor
ida
and
Am
eric
an A
cade
my
of P
edia
tric
sC
omm
ittee
on
Chi
ldre
n w
ith D
isab
ilitie
s
Who
Are
The
Chi
ldre
n?
The
hea
lth c
are
need
s of
chi
ldre
n ha
ve c
hang
ed d
ram
atic
ally
in r
ecen
t yea
rs.
Due
toad
vanc
emen
ts in
med
icin
e an
d te
chno
logy
ther
e is
a g
row
ing
popu
latio
n of
chi
ldre
n w
ithsp
ecia
l hea
lth c
are
need
s (C
SHC
N)
who
req
uire
ski
lled
heal
th c
are
and
com
plic
ated
equ
ipm
ent
on a
long
term
bas
is. T
hese
you
ng c
hild
ren
typi
cally
req
uire
ear
ly in
terv
entio
n an
d ed
ucat
iona
lpr
ogra
ms,
spe
cial
ther
apie
s, tr
ansp
orta
tion,
and
rur
sing
ser
vice
s.
Def
initi
ons
and
estim
ates
of
child
hood
chr
onic
con
ditio
ns v
ary.
Jes
sop
and
Stei
n (1
988)
defi
ne c
hild
hood
chr
onic
con
ditio
ns a
s la
stin
g th
ree
mon
ths
or m
ore
in o
ne y
ear,
or
requ
irin
gat
leas
t one
mon
th o
f ho
spita
lizat
ion.
Rec
ent e
stim
ates
(T
he F
utur
e of
Chi
ldre
n, 1
992;
New
ache
ck &
Tay
lor,
199
2) o
n ch
ildho
od c
hron
ic il
lnes
s pr
eval
ence
and
sev
erity
indi
cate
that
31 p
erce
nt o
f ch
ildre
n ar
e af
fect
ed b
y ch
roni
c co
nditi
ons.
Am
ong
thes
e ch
ildre
n ar
e m
any
high
ly p
reva
lent
con
ditio
ns a
nd in
clud
e ve
ry m
ild c
ondi
tions
suc
h as
res
pira
tory
alle
rgie
s an
dea
r in
fect
ions
to m
oder
ate
and
mor
e si
gnif
ican
t con
ditio
ns li
ke s
pina
bif
ida
and
diab
etes
. Of
this
31
perc
ent,
13 p
erce
nt h
ave
activ
ity li
mita
tions
whi
ch a
ffec
t the
ir d
aily
life
. Of
the
tota
lnu
mbe
r of
chi
ldre
n w
ith c
hron
ic h
ealth
car
e co
nditi
ons,
5 p
erce
nt h
ave
seve
re c
ondi
tions
acco
untin
g fo
r 19
per
cent
of
phys
icia
n co
ntac
ts a
nd 3
3 pe
rcen
t of
hosp
ital d
ays
rela
ted
toch
roni
c ill
ness
. Oth
er in
vest
igat
ors
(Boy
le, D
ecou
fle'
, Yca
rgin
- A
llsop
p, 1
994)
hav
e fo
und
that
17 p
erce
nt o
f ch
ildre
n in
the
Uni
ted
Stat
es w
ere
repo
rted
to h
ave
had
a de
velo
pmen
tal
disa
bilit
y.T
he p
reva
lenc
e of
the
indi
vidu
al d
isab
ilitie
s ra
nge
from
0.2
per
cent
for
cer
ebra
lpa
lsy
to 6
.5 p
erce
nt f
or le
arni
ng d
isab
ilitie
s. T
hese
con
ditio
ns ta
ken
toge
ther
had
a s
ubst
antia
lim
pact
on
heal
th a
nd e
duca
tiona
l fun
ctio
n of
eff
ecte
d ch
ildre
n:1.
5 m
ore
doct
or v
isits
, 3.5
times
mor
e ho
spita
l day
s, tw
ice
the
num
ber
of s
choo
l day
s lo
st, a
nd 2
.5-f
old
incr
ease
in a
8
likel
ihoo
d of
rep
eatin
g a
grad
e in
sch
ool c
ompa
red
with
chi
ldre
n w
ithou
t the
se c
ondi
tions
. The
exte
nt o
f th
is im
pact
was
muc
h gr
eate
r fo
r th
ose
child
ren
with
cer
ebra
l pal
sy, e
pile
psy
orse
izur
es, d
elay
s in
gro
wth
and
dev
elop
men
t, or
em
otio
nal a
nd b
ehav
iora
l pro
blem
s.
Whi
le th
e in
cide
nce
of c
hild
hood
dis
orde
rs h
as r
emai
ned
rela
tivel
y st
able
for
the
past
20
year
s, th
e su
rviv
al r
ate
of c
hild
ren
have
impr
oved
gre
atly
.In
add
ition
, new
clu
ster
s of
child
hood
chr
onic
con
ditio
ns a
re e
mer
ging
.T
hese
cat
egor
ies
incl
ude
infa
nts
surv
ivin
g ve
rylo
w b
irth
wei
ghts
,ch
ildre
nw
ith H
uman
Im
mun
odef
icie
ncy
viru
s (H
IV)
or A
cqui
red
Imm
unod
efic
ienc
y Sy
ndro
me
(AID
S), a
nd c
hild
ren
with
imm
une
supp
ress
ion
follo
win
g or
gan
tran
spla
ntat
ion.
The
dev
elop
men
t of
med
ical
spe
cial
izat
ions
has
impr
oved
the
abili
ty to
diag
nose
and
trea
t, re
sulti
ng in
impr
oved
life
exp
ecta
ncy
of th
ese
child
ren.
In 1
900,
mor
talit
yra
tes
for
child
ren,
1-1
4 ye
ars,
wer
e 87
0 pe
r 10
0,00
0 ch
ildre
n.In
198
7, th
e m
orta
lity
rate
was
33 p
er 1
00,0
00 c
hild
ren.
Thi
s tr
end
dem
onst
rate
s pr
ogre
ssiv
e im
prov
emen
ts in
sur
viva
l rat
esin
chi
ldre
n bu
t the
re h
as n
ot b
een
a co
ncom
itant
dro
p in
the
prev
alen
ce o
f ch
ildho
od c
hron
icill
ness
es a
nd d
isab
ilitie
s.
A C
ontin
uum
of
Car
e
Adv
ance
s in
med
icin
e an
d te
chno
logy
hav
e im
prov
ed th
e su
rviv
al r
ate
and
outc
ome
ofch
ildre
n w
ith c
hron
ic il
lnes
s an
d de
velo
pmen
tal d
isab
ilitie
s.C
onse
quen
tly a
con
tinuu
m o
fop
tions
(R
eiss
, Nac
kash
i, Si
deri
ts, 1
990)
for
del
iver
ing
need
ed s
ervi
ces
for
thes
e ch
ildre
n ne
eds
to b
e ex
pand
ed s
igni
fica
ntly
bec
ause
cha
nges
in th
e sy
stem
s to
pro
vide
hea
lth c
are
and
educ
atio
n ha
ve n
ot k
ept u
p w
ith th
e ad
vanc
es in
med
icin
e. I
n ad
ditio
n, p
ublic
law
s m
anda
ting
deve
lopm
enta
l int
erve
ntio
n an
d ed
ucat
iona
l ser
vice
s fo
r ch
ildre
n ar
e re
lativ
ely
new
.Pr
ior
toP.
L. 9
4-14
2, m
any
child
ren
wer
e no
t rec
eivi
ng d
evel
opm
enta
l and
edu
catio
nal s
ervi
ces.
The
goa
l of
the
cont
inuu
m o
f ca
re, i
n ad
dres
sing
the
need
s of
thes
e ch
ildre
n, s
houl
dbe
to
enha
nce
the
qual
ity o
f ca
re to
chi
ldre
n w
heth
er o
r no
t the
zhi
ld h
as a
n op
timis
ticpr
ogno
sis;
min
imiz
e th
e co
nseq
uenc
es o
f th
e ch
ild's
bio
logi
cal d
isor
ders
;
fost
er th
e ch
ild's
gro
wth
and
dev
elop
men
t;
assi
st th
e ch
ild to
dev
elop
his
/her
ful
l pot
entia
l; an
d
dim
inis
h ne
gativ
e so
cial
and
beh
avio
ral c
onse
quen
ces
for
the
child
and
fam
ily.
The
goa
ls o
f th
e co
ntin
uum
of
care
in a
ddre
ssin
g th
e ne
eds
of th
e fa
mily
, sho
uld
be to
supp
ort t
he f
amily
in f
oste
ring
the
child
's s
ense
of
belo
ngin
g to
a f
amily
uni
t;
prov
ide
the
fam
ily w
ith th
e kn
owle
dge,
ski
lls a
nd s
ervi
ces
need
ed to
mee
t the
chi
ld's
med
ical
, dev
elop
men
t, ed
ucat
iona
l and
em
otio
nal n
eeds
;
-
9
supp
ort t
he fa
mily
in it
s ro
ll as
prim
ary
care
take
r;
addr
ess
the
emot
iona
l and
adj
ustm
ent n
eeds
of t
he fa
mily
mem
bers
reg
ardi
ng th
e ch
ildw
ith a
spe
cial
hea
lth c
are
need
and
his
/her
pla
ce in
the
fam
ily;
fost
er th
e in
depe
nden
ce a
nd c
ompe
tenc
y of
the
fam
ily;
supp
ort t
he fa
mily
in it
s de
cisi
ons
rega
rdin
g th
e ca
re o
f the
chi
ld; a
nd
educ
ate
serv
ice
prov
ider
s fr
om a
ll in
volv
ed d
isci
plin
es r
egar
ding
the
need
s an
dst
reng
ths
of fa
mili
es a
nd th
e ro
le a
nd r
espo
nsib
ilitie
s of
the
serv
ice
syst
em.
In o
rder
to s
ucce
ssfu
lly a
chie
ve th
ese
fam
ily-c
ente
red
and
syst
em-f
ocus
ed g
oals
, aco
mm
unity
-bas
ed c
ontin
uum
of c
are
is n
eede
d th
at is
inte
grat
ed, c
are-
coor
dina
ted,
flex
ible
, and
fam
ily-c
ente
red.
Thi
s co
ntin
uum
sho
uld
inte
grat
e he
alth
car
e ne
eds
with
edu
catio
nal a
ndde
velo
pmen
tal c
onsi
dera
tions
.T
his
cont
inuu
m s
houl
d al
so a
llow
the
child
to r
eadi
ly m
ove
betw
een
and
amon
g co
mpo
nent
s as
nee
ded,
and
sho
uld
allo
w fo
r op
en c
omm
unic
atio
n an
dco
ordi
natio
n am
ong
serv
ice
prov
ider
s an
d fa
mily
mem
bers
thro
ugho
ut th
e tim
e th
e ch
ild is
inne
ed o
f spe
cial
ser
vice
s.
Incl
usio
n R
equi
res
Col
labo
ratio
n an
dan
Ena
blin
g V
iew
of C
SH
CN
Mee
ting
the
chal
leng
e of
incl
usio
n of
chi
ldre
n w
ith s
peci
al h
ealth
car
e ne
eds
requ
ires
aco
ntin
uum
of c
are.
Thi
s co
ntin
uum
of s
ervi
ces
intr
oduc
es s
igni
fican
t and
cha
lleng
ing
oppo
rtun
ities
.P
rofe
ssio
nals
mus
t lea
rn to
com
mun
icat
e