Young Children with
Developmental
Disabilities and Their
Families: Needs,
Policies, and Services
During the past rwo decades we have witnessed an
increase in the proportion of young children who
are identified as having developmental disabilities
and related special needs. Current figures indicate
that approximatelY' 13% of all children, and 5%
of preschool-aged children, receive special educa­
tion services (U.S. Department of Education,
1990; 2001). The largest increase in service provi­
sion over the past decade has occurred in the
birth-to-kindergarten popularion (National
Center for Educarion Statistics, 200 l). The in­
crease is attribucable to several facrors. Firsr, al­
though more children wirh very low birch weighr
are surviving due to medical rechnological ad­
vances, they often experience a range of complica­
tions, including hypoxic (inadequate oxygen)
ischemic encephalopathy (inadequate blood sup­
ply) (Shonkoff & Marshall, 2000). Such depriva­
tion can result in neuropathology and eventual
developmental delays or disabilities (Hack,
Wright, Shankaran, & Tyson, 1995). Stamon­
Chapman, Chapman, and SCOtt (2001), for exam­
ple, reported that the rare of learning problems
among boys born with very low birth weight is
2.4 times greater than that among boys born full
term.
Second, children are being identified with po­
tential disabilities, such as learning disabilities, at
increasingly younger ages (Lyon, L996). This may
be a result of early screening programs at or befote
school entry (e.g., Child Find), which have led to
identifying children ar a young age with sus­
pected developmental problems (Meisels, 1991).
Further, our understanding of early indicators of
developmental difficulties has grown, and chil­
dren with certain disorders, such as autism, are
now diagnosed at younger ages (e.g., Baron­
Cohen et aL, 1996; Frith, 2003). Finally, rhe
growth of early imervention programs, as a result
of federal legislation (Parr C of rhe Individuals
with Disabilities Education Acc) (IDEA), has
made such services more visible and accessible
(Kochanek & Buka, 1998). With increasing evi­
dence of the value of early assistance (Guralnick,
1997; Shonkoff & Hauser-Cram, 1987), pediatri­
cians and other health care providers are replacing
former practices that involved seeing if children
"grow out of" their delayed or unusual develop­
ment with new practices that incorporate referrals
to early intervention services.
Healrh care providers serve a central role in
identifying children who have a developmental
287 288
CHAPTER I4: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILlTrES AND THEIR FAMILIES
••
disability or delay. In the National Institute of
Child rt'ealth and Development (N(CHD) Study
of Early Child Care, La Paro, Olsen, and Pianta
(2002) found that the majority of vety young chil­
dren with special needs were identified by a med­
ical professional. Increasingly, physicians and
other health care professionals have become in­
volved in the screening and referral processes for
early intervention services (Soloman, 1995), yet
many health care providers report they have a lack
of familiarity with federal laws and the early in­
tervention system (Soloman, Clougherty, Shaffer,
Hofkosh, & Edwards, 1994). The purpose of this
chapter is to provide an overview of policies re­
lated to young children with developmental dis­
abilities and a review of research on the needs of
their families and the effectiveness of early inter­
vention services.
Federal Policy About Young
Children with Special Needs
Enormous policy changes related to services for
young children with disabilities and their families
have occurred over the past few decades in the
United Srates. Indeed, as a nation we have moved
from an implicit policy of institutionalizing chil­
dren with special needs, especially children with
Down syndrome and other forms of intellectual
disabilities, ro an explicit one of supporting fami­
lies as they raise children ar horne (Meisels &
Shonkoff, 2000). Legislation developed over the
past three decades has required publicly sup­
ported services be provided to younger and
younger children.
not require states ro provide services for children
under school age, it did endorse the importance of
such services. Over 10 years later, in 1986,
Congress enacted Public Law 99-457, which en­
couraged (but did not mandate) states to provide
services for infants and toddlers with disabilities
and also strengthened incentives for states to pro­
vide services for preschoolers with disabilities.
This was soon followed by legislation in 1988
(P.L. 102-119, the Individuals with Disabilities
Education Act) (IDEA), which required states to
both 1) develop a system of early intervention
services for children from 0 to 3 years old (referred
to as Part C) and 2) provide free and appropriate
public education and related services to children
with disabilities beginning at age 3 (referred to as
Part B). Although the public schools were to be
responsible for services for children of preschool
age, each state had discretion as to the state
agency responsible for administering and imple­
menting the system of early intervention (EI)
services. Therefore. the lead agency for El varies
by state. About one-third of the states initially se­
lected education as the lead agency, whereas
slightly fewer chose public health, and fewer still
selected mental health or human services
(Garwood. Fewell, & Neisworrh, 1988). Current
trends indicate that more departments of health
and fewer departments of education are taking the
lead (Meisels & Shonkoff. 2000). The legislation
requires thar regardless of lead agency selected,
the EI system should emerge from the coordina­
tion of health and education agencies at the state
and local leveL Such collaboration between the
medical and educational communities is a unique
fearure of the early intervention system.
Legislation
(n' the 1970s Congress passed landmark legisla­
tion for children with disabilities, Public Law 94­
142 (the Education for All Handicapped Children
Acr of 1975), which established the right ro a free
and appropriate public education for school-aged
children with disabilities. Although the law did
Eligibility
One critical issue in providing El services is in de­
rermining who is eligible to receive them. The
law states that such services should be provided (0
children wbo are experiencing developmental de­
lays and to tbose who have a diagnosed condition
The Needs of Parents of Young Children with Developmental Disabilities
that results in a high probability of subsequent
delays. Stares.have the option of also providing
services to children who are "at risk of having sub­
stantial delays if early intervention services are not
provided" (20 U.S.c. # 1432). States have diffi­
culty determining which children are "at risk"
and vary substantially in the extent to which ser­
vices are provided to these children (Hebbeler et
aI., 200 l). A recent survey indicates that 58% of
children enter EI due to developmental delay,
29% because of a diagnosed condition (e.g.,
Down's syndrome), and 13% because they are "at
risk" for developing delays (Hebbeler et al.,
2001). The most common reasons for receipt of EI
services are listed in Table 14.1, and, as indicated
in that table, most children who exhibit develop­
mental delays do so because of speech or commu­
nication problems.
An imporrant requirement of IDEA is the de­
velopment of an individualized education plan
(IEP) for children aged 3 or older and of an indi­
vidualized family service plan (IFSP) for children
in early intervention. Like the IEP, the IFSP de­
lineates the needs and goals for the child, but un­
like the IE P, the IFSP also specifies family
strengths and needs. The importance of rhe fam­
ily as the primary niche in which young children
Table
I
289
are nurtured and learn is dearly recognized in the
legislative requirements relating to the IFSP.
Although some concern has been expressed about
the construction of the IFSP as a potential intru­
sion into family life (Krauss, 1990), the family
focus inherent in the legislation reflects contem­
porary perspectives about the importance of the
family in enhancing the optimal development of
young children with disabilities.
The Needs of Parents of
Young Children with
Developmental Disabilities
All families need to adjust to the birth of a child,
but adjustments can be more pronounced when
the infant experiences health or developmental
problems. Much has been written about the grief
and "chronic sorrow" that parents experience in
learning that their infant has a developmental dis­
ability (e.g., Solnit & Stark, 1961). It is now
widely recognized, however, that individuals vary
considerably in their responses to this event, and
that expectations that all parents experience
"chronic sorrow" may be misguided. Some
variation in parental responses relates to parents'
Common Reasons for
Intervention Servicesa Reason
Percentage b Speech/communication impairmem or delay
Prenatal/perinatal abnormaliries (e.g., low birch weight)
MotOr impaitment or delay
Delayed development (global)
Cognitive disorders (e.g., Down syndrome)
Intellectual/cognitive impairment or delay
Central nervous system disorders (e.g., cerebral palsy)
Social environment fisk factors
Social/behavioral irrtpairmem or delay
Sensory impairment (e.g., vision, hearing impairmem)
41
19
·Soum.' Nati"na/ Early Intervention Longitudinal Study (US. Department of EdJiCation, 2000),
bpercentages ,um to more than 100 because children rnay have more than Ontl r!!Elion for reaipt of ,ervices.
L7
L2
9
7
7
4
4
3
290
CHAPTER I4: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES
II'
I
II
I~
sociocultural beliefs about the etiology of the dis­
ailility (e.g., the child is a gift to parems who can
master the challenge, or the child's disability is a
punishmem for parems' past behaviors) (Garcia
Coil & Magnuson, 2000). For most parents, the
knowledge that their infam may exhibit unusual
or delayed development requires an adjustment,
but the assumption that all parents will endure
"chronic sorrow" lacks empirical evidence.
In the 1960s and 1970s, a stage theory was
proposed to health professionals as a way to pre­
dict parems' reactions to the birth or diagnosis of
a child with disabilities (Blacher, 1984). The
three proposed stages followed those reponed for
individuals coping with the illness or death of a
dose family member (Kubler-Ross, 1997). In the
first stage, parents experience disbelief and "shop"
for physicians and treatmems. The second stage is
characterized by guilt, anger, and disappoint­
ment. The third stage occurs when parents reori­
em themselves roward adjustment and acceptance
of their child and take on an advocacy role.
Although this stage theory may be appealing, the
empirical evidence for rhese stages has been found
to be weak (Blacher, 1984). Therefore, research
has turned away from delineating stages toward
understanding parents' adaptive functioning.
Studies of Maternal Behaz.:ior
Much research has been conducted on' caregivers,
especially mothers, of young children with dis­
abilities. Many studies on the mother-child dyad
have been guided by the transactional model
(Sameroff & Chandler, 1975), which emphasizes
the bi-directional imeractions between a mother
and a child. This theoretical model does not as­
sume thar influences occur only from mother to
child bur instead focuses on rhe responses that
each has to the other in complex changing pat­
terns .•Barnard and colleagues (1989) refer co these
imeractive patcerns as a "mutually adaptive
dance." Investigations of the mother-child dyad
of typically developing children indicate that te­
sponsive reactions by mothers rhat are contingent
on children's behaviors promote positive cogni­
tive and social-emotional development in chil­
dren (Osofsky & Thompson, 2000). In comrast,
mothers who repeatedly ignore children's re­
sponses or are highly controlling and imrusive
imo children's activities reduce children's oppor­
tunities for self-efficacy (Heckhausen, 1993).
Research on the mocher-child dyad when the
child has a developmemal disability demonstrates
that maternal contingent responsiveness during
children's early years is an imporcant predictor of
development of positive cognitive and communi­
cation skills ovet time (Hauser-Cram, Warfield,
Shonkoff, & Krauss, 2001). Such productive
mother-child interaction appears to be more
challenging in dyads where the child has a dis­
ability than in other dyads, however. Children
with certain disabilities, such as those with
Down's syndrome, may provide fewer, more de­
layed, or less appropriate signals to parents dur­
ing interactions (e.g., Beeghly, Perry, & Cicchetti,
1989; Landry & Chapieski, 1990). Children with
autism and related disabilities may rarely make
eye contact with the mocher or caregiver (Hoppes
& Harris, 1990), which results in reduced oppor­
tunities for mutually responsive interaction and
joint attention. Thus, the child with a develop­
mental disability may display fewer or unusual
cues, making ir difficult tor a caregiver to respond
contingent to the child's actions.
Possibly as a result of children's unusual or un­
expected cues, mothers of children with disabili·
ties, in comparison to other mothers, appear to be
more directive to children with disabilities
(Marfo, 1990). For example, Mahoney, Fors, and
Wood (1990) found that during free play activi·
ties, mochers of children with Down syndrome,
unlike morhers of typically developing children,
directed rheir child's attention away from the ob­
jects [he child was using and toward more chal­
lenging casks, Crawley and Spiker (983) found
that parents were more directive of children with
Down syndrome who showed less interest in play
and initiated fewer imeranions with objectS.
The Needs of IJarents of Young Children with Developmental Disabilities
~uch
directiveness could result in either pro­
• motive or deleterious outcomes for children.
Directiveness could diminish children's attempts
at self-initiation as has been found in research on
dyads where the child is developing typically
(Lepper, 1981). Alternatively, directiveness could
assist children in their interactions by providing
necessary scaffolding (i.e., incremental support
and guidance as the child works on a task), for ex­
ample, by making materials easier for the child ro
reach or asking questions that will aid in problem
solution. Tannock (1988) found that maternal di­
rectives assisted children with Down syndrome in
more fully participating in the interaction.
Roach, Barratt, Miller, and Leavitt (1998) re­
ported that mothers of children with Down syn­
drome were both more directive and more
supportive than were other mothers of both
mental-age-matched and chronological-age­
matched typically developing children. They
found that the combination of maternal directive­
ness and suppOrt elicited more object play and vo­
calizations by the children with disabilities. Thus,
it appears that although mothers tend to interact
using a more directive style with young children
with disabilities, benefits accrue co rhose children
when that style is complemented by maternal
supporr of children's actions.
Parenting Stress
Maternal-child interacdon occurs within a family
system that may be functioning well or poorly
(Minuchin, 1988). If individuals experience high
levels of sttess, their parental functioning is di­
minished. According ro tesearchers who focus on
the family system (McCubbin & Patterson, 1983),
the adaptation of the family to the birth Ot diag­
nosis of a child with disabilities can be explained
by several facrors, including the meaning ascribed
to the disability, and the internal and external te­
Sources of the family.
Of the many factors thar comprise parental
well-being, parenting stress appears to be the one
291
most frequently studied in relation to parenting a
child with a disability. Although many have
claimed that parents of infants with disabilities
have exceedingly high levels of stress, empirical
work indicates otherwise. Studies indicate that,
on average, parents report normative stress during
their child's infant and tOddler years (Shonkoff,
Hauser-Cram, Krauss, & Upshur, 1992). In­
creasing stress levels occur during early childhood
(Innocenti, Huh, & Boyce, 1992), with high stress
levels during the middle childhood years (Hauser­
Cram et aI., 200l; Orr, Cameron, Dobson, & Day,
1993).
These findings are based on families who have
received early intervention services, however. It is
possible that such services provide sufficient sup­
port CO parents to temper the levels of stress par­
ents feel during the infanr and toddler years.
When the family support services of EI are with­
drawn and children make the transition from EI
to preschool and school services, parental stress
levels increase. The child-focused services of rhe
school years may offer some families respite from
intense involvement in services and the concomi­
tant demands made by such involvement bur may
also lack the means for providing support for the
family system as a whole.
Mothers and fathers evince different patterns of
parenting stress. Although mothers, in compari­
son co fathers, often provide more caregiving
funcrions for children during the infant and tod­
dler years, fathers in general report more stress at
that time (Hauser-Cram et a!., 200l). Fathers' in­
creasing levels of stress appeat co be moderated by
problem-focused coping skills. Fathers who ap­
proach their srressful problems by selecting
problem-solving strategies report less stress over
time than fathers who lack such strategies. The
stress levels of mothers, on the other hand, are
moderated by the construction of satisfying social
support netwotks (Hauser-Ctam er aI., 200 L).
Mothers who find their support networks, what­
ever the size, co be helpful show less increase in
stress. These different patterns of stress and its
292
CHAPTER
14: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILlTIES AND THEIR FAMILlES
."
moderators fot mothers and fathers suggest that
different types of assistance would be valuable to
different family members.
The Role of Fathers
We have little information about the service needs
of fathers, however, because fathers have been rel­
atively neglected in studies of children with dis­
abilities (Lamb & Billings, 1927). Indeed, many
studies have used the mother asa spokesperson for
the family or viewed fathers only as adjuncts to
mothers. In summarizing studies on fathers of
children with disabilities, Hon;tby (1995) con­
cludes that they paint "a negative picture"
(p. 105). For example, Wikler, Wasow, and
Hatfield (1981) suggest that fathers are more af­
fected (than mothers) by the physical aspects of a
child's disability. Schillinge, Schinke, and
Kirkham (1985) contend that fathers have more
difficulty accepting their sons wirh disabilities
than accepting their daughters.
Many of the prior studies, however, are based
on autobiographical accounts and clinical impres­
sions, and most are dated in terms of contempo­
rary family arrangements and roles. Because many
mothers of young children with disabilities are
now in the workforce (Landis, 1992), the roles of
fathers in families have changed. Therefore, we
need carefully constructed research on fathers'
perspectives in today's family.
A few investigations have focused on rhe posi­
tive changes that have occurred in individuals'
lives as a result of parenting a child wirh a dis­
ability. Abbot and Meredith (1986) interviewed
parents of children with mental retardation and
found thar 88% reporred positive ourcomes, such
as having greater compassion and developing
stronger families. Based on survey research,
Scorgie and Sobsey (2000) found that parents of
children with disabilities reported personal
gtowth, improved relations with others, and
changes in their philosophical or spiritual values
as a result of their parenting experiences. Such
studies indicate the complex emotions associated
with parenting a child with a disability, which
have yet to be fully investigated.
As the core of the family system, parents set the
emotional tone for the family and determine the
opportunities available to children. Most families
are composed of other members as well, and re­
search attention is increasingly focused on the en­
during importance of sibling relationships.
Siblings of Children with
Developmental Disabilities
Siblings share a powerful and complex emotional
bond that is often the most abiding of familial re­
lationships (Seligman, 1999). Early interactions
between siblings provide a context for the devel­
opment of social competencies and a significant
influence on emotional, behavioral, and cognitive
development (Dunn, 1999). When one sibling
has a disability, the relationship may take on ad­
ditional complexity. For the child with a disabil­
ity, who may experience limited peer interaCtion
and few friendships (Gresham & MacMillan,
1997), the sibling relationship may provide the
primary context for positive socialization experi­
ences with peers. Furthermore, the nondisabled
sibling may assume the role of caretaker and com­
panion in adulthood (Seltzer, Greenberg, Krauss,
& Gordon, 1997; Seltzer & Krauss, 2001). Clearly,
a child's disability has an impacr on all members
of the family, including siblings.
Just as early studies of parents of children with
disabilities focused on negative outcomes, early
investigations of siblings also assumed maladjust­
ment. Traditionally, investigarors hypothesized
that the presence of a child with a disability is a
source of developmental risk for other children in
the family (e.g., Farber, 1959). Much early work
indicated thar sisters of children with develop­
mental disabilities often assumed much greater
caregiving and household responsibility than
their peers. This disproportionate responsibility
Siblings of Children with Developmental Disabilities
was considered (0 be related (0 increased levels of
d(j){Jression and anger (Farber, 1959), a higher in­
cidence of anrisocial behavior (Gath, 1973), and
decreased coping effectiveness (Grossman, 1972).
Researchers now suggest that these early studies
may noc reveal an accurate picture.
For example, these studies were conducted be­
fore the passing of IDEA, when few, if any, special
services or SUpPo[(S were available (0 families of
young children with disabilities. The presence of
a child with a disability may well have been a
source of stress for the enrire family, which had to
face the challenges of raising the child with little
or no support from the community. Thus, these
early studies may reflect an anachronistic under­
standing of the meaning of disability (Lamorey,
1999).
Furthermore, several methodological criticisms
of this work exist. First, studies were largely tet­
tospective reports based on patienrs referred for
clinical assistance (Cuskelly, 1999). Thus, they
failed (Q recognize the many siblings who did nor
suffer from psychological adjustment problems.
Second, these repons were based largely on anec­
dotal evidence and self-report. They did nor em­
pirically investigate actual differences In
responsibility between siblings of children with
disabilities and siblings of typically developing
children, nor did they demonstrate any correlation
between responsibility and poor psychological
outcomes through systematic measurement
(Damiani, 1999).
The Role of Siblings
Mote recem work has also focused on the roles
that siblings of children with disabilities may
play within the family. Research largely supports
earlier findings that siblings, particularly sisters,
of children with disabiliries spend more time in­
volved in caregiving activities, such as babysicting
or helping with feeding, dressing, or bathing
(McHale & Gamble, 1989), even when the typi­
cally developing sibling is younger (Stoneman,
Brody, Davis, Crapps, & Malone, 1991). However,
293
generally speaking, female children appear (0
shoulder greater responsibility in the home, re­
gardless of the presence of a sibling with a dis­
ability (McHale & Gamble, 1989; Sroneman,
Brody, Davis, & Crapps, 1987). Gender aside,
when ocher home responsibilities,. such as house­
hold chores and self-care activities were consid­
ered, Cuskelly and Gunn (1993) found no
difference in levels of responsibility between sib­
lings of children with disabilities and those of
nondisabled children. Ie appears that, regardless
of gender, siblings of children with disabilities do
assume more childcare responsibility in the
family, bur they are not expected to simultane­
ously take on more household chores or self-care
responsibilities.
Although it is largely accepted that when there
is a child with a disability in the family, siblings
bear greater childcare responsibility in the home,
it is not clear that this heightened responsibility
leads to global adjustment problems. Although
McHale and Gamble (989) found a positive rela­
tion between amount of time spent in childcare
activities and anxiety, they also reponed that de­
pression, self-esteem, and conduct problems were
not related to home responsibilities. Others report
a positive telation between responsibility and so­
cioemotional functioning of siblings. For exam­
ple, Cuskelly and Gunn (1993) found that sisters
of children with disabilities exhibited fewer con­
duct problems when they had more responsibili­
ties in the home. Finally, there is some indication
that when typically developing siblings of chil­
dren with disabilities have greater caregiving re­
sponsibility, these sibling relationships are
charactetized by low levels of conflict (Stoneman
et aI., 1991).
There is a belief that siblings of children with
disabilities may be at increased risk for adjust­
ment problems because they receive less attention
from parents than their brothers and sisters
(Stoneman, 2001). This is supported by the liter­
ature on typically developing siblings in which
differential parental attention is often associated
294
CHAPTER 14: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES
tith deleterious sibling outcomes (Brody,
.. Stoneman, & Burke, 1987). Nonetheless, evidence
is mixed about whether siblings of children with
disabilities actually receIve less actention
(Kaminsky & Dewey, 2001; McHale & Gamble,
1989; Stoneman et aI., 1987). Furthermore, stud­
ies on siblings of children with disabilities do nor
clearly indicate that the effects of differemial at­
tention are detrimental. Corter and colleagues
(Corter, Pepler, Stanhope, & Abromovitch, 1992)
found no relation between maternal partiality and
sibling interactions. Pit-ten Care and Loots
(2000) reported that although siblings perceived a
difference in parental attention, they were accept­
ing of it and largely recognized and appreciated
their parems' attempts at jusrness.
Sibling Interactions
Interactions between siblings when one has a de­
velopmental disability may differ appreciably
from those in which both siblings are typically
developing. Although McHale and Gamble
(l989) found no difference in the amoum of time
sibling pairs spent in imeraction with each other,
the nature of the imeractions and the type of ac­
tivities were very different when one sibling had a
disability. In addition to more caregiving, siblings
of children with disabilities often display more
managerial behavior and engage in less coopera­
tive interaction with their brothers and sisters
when compared to siblings of typically develop­
ing children (Dallas, Stevenson, & McGurk,
1993; Stoneman et aI., 1987). Additionally, when
compared ro siblings of typically developing chil­
dren, siblings of children with Down syndrome
have been observed to be more nurturing towards
their brothers or sisters, regardless of birth order
(Abramovitch, Stanhope, Pepler, & Coner, 1987).
There is substamial evidence that the sibling
relationship develops differemly when one mem­
ber has a disability. In dyads in which (he rypi­
cally developing sibling is oldet, there is a high
degree of role asymmetry in the relationship as the
older sibling assumes a position of dominance
(Abramovitch et aI., 1987; Dallas er aI., 1993;
StOneman et aI., 1987). Although this is typical of
any sibling relationship, when one sibling has a
disability, the imbalance of power is not mini­
mized over time bur rather may become more pro­
nounced (Stoneman, 2001).
When the child with a disability is the older
sibling, the developmem of the sibling relation­
ship may be even more atypical. Over time, the
pair may experience a reversal of roles as the
younger sibling catches up to, and bypasses, the
older sibling in terms of cognitive ability and/or
funCtional skills, eventually assuming the domi­
nam role (Abramovirch et aI., 1987; Brody,
Stoneman, Davis, & Crapps, 1991; Dallas et aI.,
1993; Stoneman et aI., 1991), Although the de­
velopmem of the relationship becween children
with disabilities and their siblings may not be
normative, there is no evidence that chis asymme­
try is in any way detrimental to [he developmem
of the individuals or the relationship. Stoneman
(2001) emphasizes (hat relationships [hat are
atypical may be considered adaptive, rather than
necessarily pathological or problematic.
Many current investigations regarding the sib­
lings of children with disabilities consider the
complexity of both the sibling relationship and
[he family concext and recognize a range of possi­
ble psychological outcomes. It is imponant co un­
derstand the differenc processes and mechanisms
by which these potencial outcomes occur (McHale
& Gamble, 1989). for example, Dyson (L989)
compared older siblings of children with disabili­
ties to older siblings of typically developing chil­
dren and found no significant difterences between
the cwo groups on measures of self-concept, social
competence, and behavior problems. She reponed,
however, significant within-group variation re­
lated to borh child and family characteristics. [0
other words, Dyson found that for bmh groupS,
those with and without siblings with disabilicies,
Siblings of Children with Developmental Disabilities
there ~as great variabiliry in adjustmem and be­
havior. For all siblings, some demonstrated high
levels of self-concept and social competence with
few behavior problems, whereas some exhibited
(he opposite. This suggests that such distinctions
have more to do with individual differences and
differences in family functioning than with
whether or not a child with a disabiliry is present
in the home. In a follow-up srudy, Dyson, Edgar,
and ernic (989) indicated that family context
variables, such as parental stress, family relation­
ship, social support, and the family's emphasis on
personal growth, were significant predictors of
self-concept, social competence, and behavior
problems in siblings of children with a variety of
disabilities.
Sibling Adjustment
Sibling adjustmem is related to many factors, in­
cluding (he rype and severity of the sibling's dis­
ability and rhe temperamem of both siblings;
however, evidence increasingly poims (0 the im­
portance of the family comext. Parents' psycho­
logical well-being, imeractions, and responses (0
stress affect the well-being of the individual chil­
dren within the family. In a 3-year longitudinal
study, siblings of children with pervasive develop­
mental delay (POD) exhibited more behavior
problems than either the siblings of children with
Down syndrome or those of typically developing
children (Fisman, Wolf, Ellison, & Freeman,
2000). Sibling behavior problems in all groups,
however, were related ro parental stress, and par­
ents of children with POD were found co main­
tain the highest stress levels ovet time. McHale
and Gamble (1989) found no direct connections
between the characteristics of children with dis­
abilities and th@ well-being of theit older brothers
and si~ters, bur they did find that siblings who ex­
perienced more negative imeractions with their
mothers exhibired more depression, anxiety, and
low self-esteem. Thus, family environmem is a
295
critical factot in understanding sibling adjust­
ment to childhood disability.
Some recent studies have found that the pres­
ence of a child with a disability has a positive im­
pact on family climate and sibling adjustment. In
one study, siblings of children with Down syn­
drome were collectively found co have above aver­
age scores on a measure of self-concept (Van Riper,
2000). Then again, higher self-concept scotes
were related ro greater family resources and fewer
srressful events experienced by the family. These
family characteristics, as well as coping strategies
and effective problem-solving communication
techniques, also predicted the sibling's social
competence.
Although family context is important in un­
derstanding the relationships that exist between
siblings when one has a disability, focus on this
tOpic is just emerging in the research literature
(Stoneman, 2001). There is evidence that children
regard theit siblings with an intellectual disabil­
ity more positively when they perceive their fam­
ilies as communicative and emotionally
responsive (Weinger, 1999). This indicates that in
families in which members are safely able to ex­
press a range of feelings, children express a greater
acceptance of their siblings with disabilities. More
investigation is needed, however, to determine the
process by which the family climate influences
the relationship between siblings when one has a
disability.
In general, many children reflect positively on
the experience of having a sibling wirh a disabil­
ity (Eisenberg, Baker, & Blacher, 1998;
Grossman, 1972; Kaminsky & Dewey, 2001; Pit­
ten Care & Loots, 2000; Roeyers & Mycke, 1995;
Van Riper, 2000). These children rend to rate
their sibling relarionships more positively than do
comparison children (Roeyers & M ycke, 1995),
report fewer conflicts, and express greater admita­
tion for their siblings (Kaminsky & Dewey,
2001). Many children acknowledge that they have
benefited from having a sibling with a disability.
296
CHAPTER 14: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES
4fhey credit their siblings with helping them gain
virtue~ such as patience, tolerance, benevolence,
and appteciation of health and family (Eisenberg
et aI., 1998; Van Riper, 2000).
THE ROLE OF SUPPORT GROUPS
When children talk about the negative aspects
of having a sibling with a disability, they often
cire worry about health concerns and the futute
(Eisenberg et aI., 1998). In one study, 75% of sib­
lings teported that they sometimes worried about
their sibling's health, or future, or both (Pit-ten
Cate & Loots, 2000). Damiani (1999) suggests
that worry is quire prevalent among the siblings
of children with disability and that this might
present one of the greatest risk factors for these
children.
Given the worries of these siblings, such chil­
dren may benefit from support groups (hat ad­
dress (he concerns and uncerrainty (hat (hey feel
about the futute lives of their brothers and sisters
and their place in it. Research also indicates that
siblings have a need for information. Roeyers and
Mycke (1995) found thar brothers and sisters of
children with autism rated their sibling relation­
ships more positively when they had more knowl­
edge about the nature of autism. In a sample of
Dutch children, aged 10 to 19 years, with siblings
wirh physical disabilities, many of the parrici­
pants were unable to provide details regarding
their siblings' disabilities, but when given the op­
portunity asked many questions about medical
matters (Pit-ten Cate & Loots, 2000). This is a
further indication that siblings may need a reli­
able and accessible source of information about
disabilities outside of the family; health care pro­
fessionals could be a source of such information.
Siblings may also benefit from services targeted
a(. supporting their psychological well-being, par­
ticularly in the presence of multiple risk factors. A
group of low-income children, all having a sibling
with a developmental disability, demonstrated de­
creased levels of anxiety, depression, and stress,
and improved self-esteem after participating in a
15-week after-school program (Phillips, 1999).
The program consisted of recreational activities,
assistance with homework, and discussion groups
focused on issues of developmental disabilities. A
comparison group of children, who teceived no in­
tervention, showed no similar gains over the same
time period.
Clearly, siblings of children with disabilities
have much to gain from interventions focused on
their unique needs. The importance of the family
context, however, carries additional implications
for intervention. Given the existing empirical ev­
idence, interventions focused on reducing parental
stress, anxiety, and depression and increasing fam­
ily communication and coping strategies may
provide benefits for all members of the family.
Many EI programs aim [0 support families as they
raise children with disabilities and, as discussed in
the next section, do so by providing a range of
highly individualized services.
Early Intervention Services
Early intervention services are multidisciplinary
services provided [0 children with developmental
disabilities, delays, or risks during the first few
years of life. The goal of these programs is [0 pro­
mote the health and optimal development of the
children as well as to support adaptive parenting
and positive functioning of their families
(Shonkoff & Meisels, 2000). A wide range of dis­
ciplines are involved in providing such services,
including public health, medicine, education,
psychology, social work, child care, speech and
language services, and occupational and physical
therapy, and, therefore, a broad range of services
are provided (Table 14.2). The specific services are
usually highly individualized based on child and
family needs and strengths.
Early intervention programs are serving almOS(
60% more children and families now than they
were a decade ago when states were first mandated
to provide such services (U .S. Deparrmeot of
Education, 2001). In addition to improved early
Early Intervention Services
297
Table q.2 Types of Early Intervention Services Commonly Provided to Children
Familiesa, b
Type
Percentage"
Service coordination
Speechllanguage therapy
Special instruction
Occupational therapy
Physical therapy
Developmental monitoring
Health-related services
Family training
Other family support (e.g., counseling)
Audiology
Social work services
80
53
44
39
38
38
25
20
14
14
12
'ServlceI fT1(jst commonly prl)llided within the first 6 months 0/ enrollment. 'Soum: National Early Intervention Longitudinal Study (U.S. Department 0/ Education, 2000). 'Percentages sum to more than 100 became children and /amilier often receive multiple services. diagnostic methods, rhe increased demand for
services seems to be dtiven by a strong advocacy
movement for and by individuals with disabilities
and a heightened public awareness of the impor­
tance of the firsr 3 years of life in shaping devel­
opmental outcomes (Gutalnick, 1998).
Notwithstanding the growing emphasis on,
and awareness of, EI as an important factor in pro­
moting optimal development for young children
with disabilities, several challenges to research on
the EI system persist. Fitst, researchers disagree
about how to determine the effectiveness of EI.
Debates exist about which child outcomes deserve
to be studied; whether family outcomes also
should be evaluated; how to measure and reliably
record the types, intensity, and individualized na­
ture of services themselves; and the extent to
which both quantitative and qualitative ap­
proaches are needed ro understand family
processes (Hauser-Cram, Warfield, Upshur, &
Weisner, 200e). Hisrorically, evaluation tesearch
on El focused almost exclusively on cognitive out­
comes with a neglect of socioemotional function­
ing of children and families (Shonkoff &
Hauser-Cram, 1987). There appears to be consid­
erable agreement that childten with established
disabilities who receive EI demonstrate less dete­
riotation in theit scores on standardized tests of
intellectual ability than their peers who do not re­
ceive comprehensive services (Guralnick, 1998;
Guralnick & Bricker, 1987; Hines & Bennett,
1996; Spiker & Hopmann, 1997). These advanta­
geous effects, however, have generally been found
only during the first 5 years of life; long-term
gains remain to be examined (Guralnick, 1998).
Despite the focus of EI services on family
strengths and needs as well as on the individual
child, few evaluation studies have considered
parental benefits of participation In EL
Examining parental benefits of EI services is im­
portant in its own right because positive adjust­
ment to parenting a child with a disability has
potential advantages for all family members.
Furthermore, because rhe family context is central
to the optimal development of children, including
children with disabilities (Hauser-Cram er aI.,
2001), assisting families with maintaining a sup­
portive context for parenting is an aim of most EI
298
..
CHAPTER
14:
YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES
•
programs. In one of the few studies on parental
outcomes associated with EI participation,
Warfield and colleagues (Warfield, Hauser-Cram,
Krauss, Shonkoff, & Upshur, 2000) found that at
(he end of the EI experience, mothers who had re­
ceived more hours of EI services reported im­
proved family cohesion and more helpful social
support nerworks in comparison to other mothers
in EL
Evaluating Early
Intervention Programs
Most studies of E[ effectiveness have focused on
the program as a whole. [n an attempt to deter­
mine which features of EI programs were most ef­
fective, researchers at the Early Intervention
Research Insritute conducted a series of longitudi­
nal studies employing randomized experimental
designs. These studies yielded little information
about the relative effectiveness of various program
components, however. For example, White et aL
(1994) reported no outcome differences for chil­
dren who received intensive, family-centered in­
tervention serv.ices in comparison to those who
received center-based services once per week. One
reason why so few program variation effects were
fDund may be that not all children and families
benefit equally from equal amounts of interven­
tion (Dunst & Trivette, 1997). Indeed, given the
diversity of children enrolled in the system and
the wide range of services provided, it is difficult,
and perhaps not even particularly meaningful, to
consider the effectiveness of EI at a macro level
(McCollum, 2002).
Additionally, Marfo and colleagues (1992)
found that factors such as a child's developmental
c9mpetency at entry into EI and the home envi­
ronment were stronger predictors of developmen­
,tal outcomes than were specific program variables.
In other words, children who entered El with the
greatest delays tended to show the least improve­
ment in developmental scores, but the quality of
the home environment and parental expectations
also comributed significantly to post-intervemion
developmental sratus. These are important find­
ings for several reasons. First, that entry-level
child characteristics were the most influential pre­
diCtor of developmental outcomes highlights the
need for parents and professionals to be realistic in
their expectations of what EI can accomplish for
)'oung children with significant deficits. Second,
the importance of family ecology in determining
developmental outcomes underscores the neces­
sity for EI services to focus not only on the child,
but also on the family as a whole.
Guralnick (1997) makes a useful distinction
between first-generation and second-generation
research in EL First-generation research focuses on
investigating the general effectiveness of com­
prehensive EI programs. [n contrast, second­
generation research addresses more specific issues
that are aimed at optimizing individual outcomes,
infDrming program design, and increasing our un­
derstanding of rhe influence of individual child
and family characteristics on intervention efficacy.
Some researchers maintain that global efficacy of
EI has been established by first-generation re­
search, and second-generation studies are now
needed to inform the development of services that
are responsive to individual needs and will evoke
the most advantageous outcomes (Guralnick,
1997; McCollum, 2002). Such studies are diffi­
cult to conduct, however, given the individualized
natute of EI and the heterogeneous population of
children and families served.
Challenge of Inconsistency
and Fragmentation
A related challenge to the evaluation of EI services
is due to the inconsistency and fragmentation
within the EI system. For example. EI programs
var)' widely from state to state. Not only does fed­
eral legislation allow the states latitude in choos­
ing a lead agency, it also gives them considerable
discretion in the determinarion of who is eligible
for services. Alrhough all states must serve chil­
Early Intervention Services
dren with established disabilities and developmen­
tdt delays, these criteria are not clearly defined by
the federal government for children under 3 years
of age, and states are allowed to establish their own
criteria. State definitions of "developmental delay"
vary widely (Hebbeler et aI., 1999).
For example, Massachusetts has specific guide­
lines abour the minimal extent of delay required
for a child to be eligible for EI based on the child's
age (e.g., 1.5 months delay for children aged
6 months or less, 6 months delay for children aged
19-36 months) (Massachusetts Department of
Public Health, 1998). In Utah, a significant delay
is defined as 1.5 standard deviations at or below
the mean or below the 7th percentile in one or
more areas of development based on a standard as­
sessment (Utah Department of Health, 1999). In
Alabama, infants or toddlers must be delayed by at
least 25% in their cognitive, communicative, so­
cial, emotional, or adaptive development to be eli­
gible for EI services (Alabama Department of
Rehabilitation Services, 2003). Additionally, states
may also decide whether or not to provide services
[Q children "at risk" for exhibiting delays. This has
resulted in great inconsistency; many children who
are eligible for services in one state are not in an­
other. Hence, although there exists a federal man­
date to serve infants and toddlers with disabilities,
(here is little equity with regard to who may par­
ticipate in EI ptograms (Bailey, 2000).
Additionally, there is considerable variability
among states along several other dimensions.
Specifically, states differ with regard to (he num­
ber and type of agencies that are involved in the
provision of services and in the ways that services
are coordinated among agencies. There is even
significant disparity in the degree to which states
manifest within-state differences in local systems
(Hebbeler et al", 1999).
For example, in Illinois each local area has an
entity called "Child and Family Connecrioos" un­
der contract from the state lead agency, which is
responsible for intake and for connecting families
with the local service provider. This system pro­
299
vides some uniformity across the state in terms of
intake, referral, and services. In contrast, in Ohio
each county has a collaborative gtoup that is re­
sponsible for establishing an EI system. That sys­
tem varies widely from county to county; one
county may have a single entry point to EI ser­
vices, and the adjacent county may offer several
points of entry.
Any general discussion of EI and its effective­
ness is made more difficult by the heterogeneous
nature of the children and families who partici­
pate in EI services. State differences aside, chil­
dren may be eligible for EI services for a variety of
reasons. The heterogeneity of children entering EI
is illustrated by early reports from the National
Early Intervention Longitudinal Study (NEILS).
Commissioned by the Office of Special Education
Programs, NEILS involves a nationally represen­
tative sample of more than 5,000 children and
their families (Hebbeler et at, 2001; U.S.
Department of Education, 2000). Preliminary
dam include a total of 305 specific descriptors of
reasons for participams' initial eligibility for EI
services, such as visual impairmem, Down syn­
drome, spina bifida, or homelessness, to name bur
four. These descriptors can be classified into di­
verse categories, such as sensory impairmems,
congenital disorders, cemral nervous system dis­
orders, and social environment risk factors
(Hebbeler et al., 200 l; U.S. Departmem of
Education, 2000).
Because E[ serves children with a broad range
of abilities and needs, systems nationwide offer a
wide array of services to both children and their
families. These services are provided by many dif­
ferem types of practitioners and professionals, fre­
quently through multiple agencies. Services may
be child focused, such as occupational therapy,
physical thempy, or speech and language services;
medical care or special education services may also
be included. Parents may receive mental health
counseling, social services, or attend parenting
classes, information sessions, or suppOrt groups.
EI services may also be provided in a range of
300
CHAI)TER
14: YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES
·environments, from the home, to community set­
• tings such as childcate centers, to segregated, self­
contained programs. Goals may focus on
improving cognitive outcomes, communication
skills, physical functioning, or social and emo­
tional competencies. A systemwide objective of EI
is that children and their families receive a pack­
age of services that is individualized to meet their
needs.
Developmental Systems Model
Given the diversity of the participants, the range
of goals, and the breadth of services provided,
combined with the inconsistencies and fragmen­
tation that characterize the system at the state and
national levels, it is small wonder that questions
about effectiveness have been difficult ro address
with scientific rigor, and a coherent framework in
which ro view and discuss the EI system has been
elusive. However, despite this diversity, there are
some unifYing themes that emerge when EI is
considered overalL Although service delivery
models may differ from state to state, the federal
legislation (Parr C of IDEA) requires an interdis­
ciplinary collaborarive system of services and
agencies that serve children and families with a
wide range of abilities and needs.
When we look ar the various models of EI that
currendy proliferate, tWO overarching principles
emerge (McCollum, 2002). First, EI practices are
guided by 'an ecological perspective of human de­
velopment that recognizes that rhe child develops
within multiple intersecting environments
(Bronfenbrenner, 1979). Second, service delivery
models adopt a "systems of service" framework
that stresses coordination and collaboration
among various agencies and professionals. Taken
together, these guiding themes underlie the de­
velopmental systems model of EI (Guralnick,
2001)~
FAMILY
The developmenral systems model recognizes
thar the family is the primary context of develop­
ment for the young child (Bronfenbrenner, 1986).
Guralnick (1997) notes that within this context,
families influence child development in three
ways: through the quality of parent-child interac­
tions, through the types of experiences that are
made available to the child, and by ensuring the
child's health and safety. These three patterns are
largely determined by both personal characteris­
tics of the family, such as psychological well-being
and intellectual ab!lity, as well as environmental
characterisrics, such as the availability of social
suppOrt and the family's financial resources.
Furthermore, this model adopts a transactional
perspective (Sameroff & Fiese, 2000) by recogniz­
ing rhat these factors interact with child charac­
teristics, such as the nature and severity of a
child's disability and the child's individual tem­
perament, ro shape the family ecology and creare
a unique developmental COntext for every family.
Currem configurations of E[ emphasize family
by providing a system of services aimed ar sup­
poning a family ecology that optimizes child de­
velopment. EI programs roUtinely include services
focused on providing support and informarion to
family members, including memal healrh ser­
vices, counseling, and educational programs fo­
cused on patenting a child with a disability.
Furthermore, many child-focused therapemic
services take place in the home environment
andlor involve family members actively.
SCHOOL AND COMMUNITY
Present EI praCtices also recognize the impor­
tance of Other, more distal, contexts of develop­
ment beyond the family, most specifically, school
and community. There is considerable emphasis
in both EI theory and practice on encouraging
participants in E[ programs to engage in inclusive
community settings and activities. Such practices
promote peer relationships and enhanced social
competence (Guralnick, 2000). It is underslOo d
that one role of E[ is (Q enable young children
with disabilities (Q participate in the same devel­
opmental contexts as theIr typically developing
301
References
•
~
peers (McCollum, 2002), including daycare and
preschool settings. Toward this end, practitioners
make every attempt to provide EI services in in­
clusive natural environments (Walsh, ROllS, &
Lutzer, 2000). Thus? to the maximum extent pos­
sible, all services and therapies are provided in
home, school, or community settings, as opposed
to segregated settings. Indeed, Guralnick (2001)
considers community inclusion to be one of the
three core principles of a developmental systems
model, along with a focus on families and inte­
gration at the systems leveL
Ers focus on family and community contexts
draws heavily on current theories of human devel­
opment, recognizing that the factors that influ­
ence optimal development fot childten with and
without disabilities are many and diverse, and of­
ten interact in complex ways. Clearly, no single
provider Ot agency can address all of these factors
or the wide array of developmental needs that may
be presented by the heterogeneous community of
children and families who participate in EI pro­
grams. To provide the comprehensive, individual­
ized package of services that has become the
hallmark of the EI system, an integrated, multi­
disciplinary system of services consisting of mul­
tiple practitioners and agencies is essentiaL
For such a system to operate smoothly, a high
level of collaboration and cooperation among the
various components is warranted. Addicionally, a
service coordinator is an important component to
help successfully navigate the complexities of the
system and smooth transitions for families.
Family members also may be viewed as integral
components of the system of service. The forma­
tion of parent-professional partnerships that rec­
ognize parents as cocoordinators and co-providers
of services for their children is key to the success
of EI sei:vices (Turnbull, Turbiville, & Turnbull,
2000).
The formation of such pactnerships, however,
requires EI service providers to be knowledgeable
of and sensitive to the various ethno-theories that
parents hold about intervention practices and
about the nature of developmental disabilities.
Parents' belief systems, and rhe cultural contexts
in which such beliefs develop, are an often over­
looked but important part of the provision of ser­
vices (Garcia Coli & Maguson, 2000; Super &
Harkness, 1997). The future of the EI system will
depend on irs ability to attend to the development
of cultutal competence of service providers
(Hanson, 1998).
Conclusion
In conclusion, research on the effeCtiveness of EI
faces many challenges. Nevertheless, this system
of services has much to offer young children with
disabilities and their families. It is an evolving
system that requires responsiveness ro a heteroge­
neous range of children and families. Health care
providers are importam sources of information
about such services, and they will serve families
well by becoming knowledgeable not only about
the particular needs of children with disabilities
and their families but also about the various EI
services provided in their local communities.
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