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 educashytion services (US Department of Education 1990 2001) The largest increase in service provishysion over the past decade has occurred in the birth-to-kindergarten popularion (National Center for Educarion Statistics 200 l) The inshycrease is attribucable to several facrors Firsr alshythough more children wirh very low birch weighr are surviving due to medical rechnological adshyvances they often experience a range of complicashytions including hypoxic (inadequate oxygen) ischemic encephalopathy (inadequate blood supshyply) (Shonkoff amp Marshall 2000) Such deprivashytion can result in neuropathology and eventual developmental delays or disabilities (Hack Wright Shankaran amp Tyson 1995) StamonshyChapman Chapman and SCOtt (2001) for examshyple reported that the rare of learning problems among boys born with very low birth weight is 24 times greater than that among boys born full term

Second children are being identified with poshytential 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 (eg Child Find) which have led to

identifying children ar a young age with susshypected developmental problems (Meisels 1991) Further our understanding of early indicators of developmental difficulties has grown and chilshydren with certain disorders such as autism are now diagnosed at younger ages (eg BaronshyCohen 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 amp Buka 1998) With increasing evishydence of the value of early assistance (Guralnick 1997 Shonkoff amp Hauser-Cram 1987) pediatrishycians and other health care providers are replacing former practices that involved seeing if children grow out of their delayed or unusual developshyment 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

bullbull 288 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILlTrES AND THEIR FAMILIES

disability or delay In the National Institute of Child rtealth and Development (N(CHD) Study of Early Child Care La Paro Olsen and Pianta (2002) found that the majority of vety young chilshydren with special needs were identified by a medshyical professional Increasingly physicians and other health care professionals have become inshyvolved 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 inshytervention system (Soloman Clougherty Shaffer Hofkosh amp Edwards 1994) The purpose of this chapter is to provide an overview of policies reshylated to young children with developmental disshyabilities and a review of research on the needs of their families and the effectiveness of early intershyvention 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 chilshydren with special needs especially children with Down syndrome and other forms of intellectual disabilities ro an explicit one of supporting famishylies as they raise children ar horne (Meisels amp

Shonkoff 2000) Legislation developed over the past three decades has required publicly supshyported services be provided to younger and younger children

Legislation (n the 1970s Congress passed landmark legislashytion for children with disabilities Public Law 94shy142 (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

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 enshycouraged (but did not mandate) states to provide services for infants and toddlers with disabilities and also strengthened incentives for states to proshyvide services for preschoolers with disabilities

This was soon followed by legislation in 1988 (PL 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 impleshymenting the system of early intervention (EI) services Therefore the lead agency for El varies by state About one-third of the states initially seshylected education as the lead agency whereas slightly fewer chose public health and fewer still selected mental health or human services (Garwood Fewell amp Neisworrh 1988) Current trends indicate that more departments of health and fewer departments of education are taking the lead (Meisels amp Shonkoff 2000) The legislation requires thar regardless of lead agency selected the EI system should emerge from the coordinashytion 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

Eligibility One critical issue in providing El services is in deshyrermining who is eligible to receive them The law states that such services should be provided (0

children wbo are experiencing developmental deshylays and to tbose who have a diagnosed condition

The Needs of Parents of Young Children with Developmental Disabilities 289

that results in a high probability of subsequent delays Stareshave the option of also providing services to children who are at risk of having subshystantial delays if early intervention services are not provided (20 USc 1432) States have diffishyculty determining which children are at risk and vary substantially in the extent to which sershyvices 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 (eg Downs 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 141 and as indicated in that table most children who exhibit developshymental delays do so because of speech or commushynication problems

An imporrant requirement of IDEA is the deshyvelopment of an individualized education plan (IEP) for children aged 3 or older and of an indishyvidualized family service plan (IFSP) for children in early intervention Like the IEP the IFSP deshylineates the needs and goals for the child but unshylike the IE P the IFSP also specifies family strengths and needs The importance of rhe famshyily as the primary niche in which young children

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 intrushysion into family life (Krauss 1990) the family focus inherent in the legislation reflects contemshyporary 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 disshyability (eg Solnit amp 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

Table I Common Reasons for Intervention Servicesa

Reason Percentageb

Speechcommunication impairmem or delay 41 Prenatalperinatal abnormaliries (eg low birch weight) 19 MotOr impaitment or delay L7

Delayed development (global) L2 Cognitive disorders (eg Down syndrome) 9 Intellectualcognitive impairment or delay 7 Central nervous system disorders (eg cerebral palsy) 7 Social environment fisk factors 4 Socialbehavioral irrtpairmem or delay 4 Sensory impairment (eg vision hearing impairmem) 3

middotSoum Natina Early Intervention Longitudinal Study (US Department of EdJiCation 2000)

bpercentages um to more than 100 because children rnay have more than Ontl rElion for reaipt of ervices

290 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

II sociocultural beliefs about the etiology of the disshyailility (eg the child is a gift to parems who can master the challenge or the childs disability is a punishmem for parems past behaviors) (Garcia

I Coil amp Magnuson 2000) For most parents the knowledge that their infam may exhibit unusual or delayed development requires an adjustment

I but the assumption that all parents will endure chronic sorrow lacks empirical evidence

In the 1960s and 1970s a stage theory was

I proposed to health professionals as a way to preshy

I 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 disappointshyment The third stage occurs when parents reorishyem 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 Behazior Much research has been conducted on caregivers especially mothers of young children with disshyabilities Many studies on the mother-child dyad have been guided by the transactional model (Sameroff amp Chandler 1975) which emphasizes the bi-directional imeractions between a mother and a child This theoretical model does not asshysume thar influences occur only from mother to child bur instead focuses on rhe responses that each has to the other in complex changing patshyterns bullBarnard 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 teshysponsive reactions by mothers rhat are contingent

on childrens behaviors promote positive cognishytive and social-emotional development in chilshydren (Osofsky amp Thompson 2000) In comrast mothers who repeatedly ignore childrens reshysponses or are highly controlling and imrusive imo childrens activities reduce childrens opporshytunities for self-efficacy (Heckhausen 1993)

Research on the mocher-child dyad when the

child has a developmemal disability demonstrates that maternal contingent responsiveness during childrens early years is an imporcant predictor of development of positive cognitive and communishycation skills ovet time (Hauser-Cram Warfield Shonkoff amp Krauss 2001) Such productive mother-child interaction appears to be more challenging in dyads where the child has a disshyability than in other dyads however Children with certain disabilities such as those with Downs syndrome may provide fewer more deshylayed or less appropriate signals to parents durshying interactions (eg Beeghly Perry amp Cicchetti 1989 Landry amp Chapieski 1990) Children with autism and related disabilities may rarely make eye contact with the mocher or caregiver (Hoppes amp Harris 1990) which results in reduced opporshytunities for mutually responsive interaction and joint attention Thus the child with a developshymental disability may display fewer or unusual cues making ir difficult tor a caregiver to respond contingent to the childs actions

Possibly as a result of childrens unusual or unshyexpected cues mothers of children with disabilimiddot 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 activimiddot ties mochers of children with Down syndrome unlike morhers of typically developing children directed rheir childs attention away from the obshyjects [he child was using and toward more chalshylenging 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 291

~uch directiveness could result in either proshybull motive or deleterious outcomes for children

Directiveness could diminish childrens 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 (ie incremental support and guidance as the child works on a task) for exshyample by making materials easier for the child ro reach or asking questions that will aid in problem solution Tannock (1988) found that maternal dishyrectives assisted children with Down syndrome in more fully participating in the interaction Roach Barratt Miller and Leavitt (1998) reshyported that mothers of children with Down synshydrome were both more directive and more supportive than were other mothers of both mental-age-matched and chronological-ageshymatched typically developing children They found that the combination of maternal directiveshyness and suppOrt elicited more object play and voshycalizations 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 childrens 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 dishyminished According ro tesearchers who focus on the family system (McCubbin amp Patterson 1983) the adaptation of the family to the birth Ot diagshynosis of a child with disabilities can be explained by several facrors including the meaning ascribed to the disability and the internal and external teshySources of the family

Of the many factors thar comprise parental well-being parenting stress appears to be the one

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 childs infant and tOddler years (Shonkoff Hauser-Cram Krauss amp Upshur 1992) Inshycreasing stress levels occur during early childhood (Innocenti Huh amp Boyce 1992) with high stress levels during the middle childhood years (HausershyCram et aI 200l Orr Cameron Dobson amp Day 1993)

These findings are based on families who have received early intervention services however It is possible that such services provide sufficient supshyport CO parents to temper the levels of stress parshyents feel during the infanr and toddler years When the family support services of EI are withshydrawn 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 concomishytant 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 comparishyson co fathers often provide more caregiving funcrions for children during the infant and todshydler years fathers in general report more stress at that time (Hauser-Cram et a 200l) Fathers inshycreasing levels of stress appeat co be moderated by problem-focused coping skills Fathers who apshyproach 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 whatshyever 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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

bullbull 288 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILlTrES AND THEIR FAMILIES

disability or delay In the National Institute of Child rtealth and Development (N(CHD) Study of Early Child Care La Paro Olsen and Pianta (2002) found that the majority of vety young chilshydren with special needs were identified by a medshyical professional Increasingly physicians and other health care professionals have become inshyvolved 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 inshytervention system (Soloman Clougherty Shaffer Hofkosh amp Edwards 1994) The purpose of this chapter is to provide an overview of policies reshylated to young children with developmental disshyabilities and a review of research on the needs of their families and the effectiveness of early intershyvention 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 chilshydren with special needs especially children with Down syndrome and other forms of intellectual disabilities ro an explicit one of supporting famishylies as they raise children ar horne (Meisels amp

Shonkoff 2000) Legislation developed over the past three decades has required publicly supshyported services be provided to younger and younger children

Legislation (n the 1970s Congress passed landmark legislashytion for children with disabilities Public Law 94shy142 (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

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 enshycouraged (but did not mandate) states to provide services for infants and toddlers with disabilities and also strengthened incentives for states to proshyvide services for preschoolers with disabilities

This was soon followed by legislation in 1988 (PL 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 impleshymenting the system of early intervention (EI) services Therefore the lead agency for El varies by state About one-third of the states initially seshylected education as the lead agency whereas slightly fewer chose public health and fewer still selected mental health or human services (Garwood Fewell amp Neisworrh 1988) Current trends indicate that more departments of health and fewer departments of education are taking the lead (Meisels amp Shonkoff 2000) The legislation requires thar regardless of lead agency selected the EI system should emerge from the coordinashytion 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

Eligibility One critical issue in providing El services is in deshyrermining who is eligible to receive them The law states that such services should be provided (0

children wbo are experiencing developmental deshylays and to tbose who have a diagnosed condition

The Needs of Parents of Young Children with Developmental Disabilities 289

that results in a high probability of subsequent delays Stareshave the option of also providing services to children who are at risk of having subshystantial delays if early intervention services are not provided (20 USc 1432) States have diffishyculty determining which children are at risk and vary substantially in the extent to which sershyvices 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 (eg Downs 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 141 and as indicated in that table most children who exhibit developshymental delays do so because of speech or commushynication problems

An imporrant requirement of IDEA is the deshyvelopment of an individualized education plan (IEP) for children aged 3 or older and of an indishyvidualized family service plan (IFSP) for children in early intervention Like the IEP the IFSP deshylineates the needs and goals for the child but unshylike the IE P the IFSP also specifies family strengths and needs The importance of rhe famshyily as the primary niche in which young children

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 intrushysion into family life (Krauss 1990) the family focus inherent in the legislation reflects contemshyporary 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 disshyability (eg Solnit amp 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

Table I Common Reasons for Intervention Servicesa

Reason Percentageb

Speechcommunication impairmem or delay 41 Prenatalperinatal abnormaliries (eg low birch weight) 19 MotOr impaitment or delay L7

Delayed development (global) L2 Cognitive disorders (eg Down syndrome) 9 Intellectualcognitive impairment or delay 7 Central nervous system disorders (eg cerebral palsy) 7 Social environment fisk factors 4 Socialbehavioral irrtpairmem or delay 4 Sensory impairment (eg vision hearing impairmem) 3

middotSoum Natina Early Intervention Longitudinal Study (US Department of EdJiCation 2000)

bpercentages um to more than 100 because children rnay have more than Ontl rElion for reaipt of ervices

290 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

II sociocultural beliefs about the etiology of the disshyailility (eg the child is a gift to parems who can master the challenge or the childs disability is a punishmem for parems past behaviors) (Garcia

I Coil amp Magnuson 2000) For most parents the knowledge that their infam may exhibit unusual or delayed development requires an adjustment

I but the assumption that all parents will endure chronic sorrow lacks empirical evidence

In the 1960s and 1970s a stage theory was

I proposed to health professionals as a way to preshy

I 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 disappointshyment The third stage occurs when parents reorishyem 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 Behazior Much research has been conducted on caregivers especially mothers of young children with disshyabilities Many studies on the mother-child dyad have been guided by the transactional model (Sameroff amp Chandler 1975) which emphasizes the bi-directional imeractions between a mother and a child This theoretical model does not asshysume thar influences occur only from mother to child bur instead focuses on rhe responses that each has to the other in complex changing patshyterns bullBarnard 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 teshysponsive reactions by mothers rhat are contingent

on childrens behaviors promote positive cognishytive and social-emotional development in chilshydren (Osofsky amp Thompson 2000) In comrast mothers who repeatedly ignore childrens reshysponses or are highly controlling and imrusive imo childrens activities reduce childrens opporshytunities for self-efficacy (Heckhausen 1993)

Research on the mocher-child dyad when the

child has a developmemal disability demonstrates that maternal contingent responsiveness during childrens early years is an imporcant predictor of development of positive cognitive and communishycation skills ovet time (Hauser-Cram Warfield Shonkoff amp Krauss 2001) Such productive mother-child interaction appears to be more challenging in dyads where the child has a disshyability than in other dyads however Children with certain disabilities such as those with Downs syndrome may provide fewer more deshylayed or less appropriate signals to parents durshying interactions (eg Beeghly Perry amp Cicchetti 1989 Landry amp Chapieski 1990) Children with autism and related disabilities may rarely make eye contact with the mocher or caregiver (Hoppes amp Harris 1990) which results in reduced opporshytunities for mutually responsive interaction and joint attention Thus the child with a developshymental disability may display fewer or unusual cues making ir difficult tor a caregiver to respond contingent to the childs actions

Possibly as a result of childrens unusual or unshyexpected cues mothers of children with disabilimiddot 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 activimiddot ties mochers of children with Down syndrome unlike morhers of typically developing children directed rheir childs attention away from the obshyjects [he child was using and toward more chalshylenging 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 291

~uch directiveness could result in either proshybull motive or deleterious outcomes for children

Directiveness could diminish childrens 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 (ie incremental support and guidance as the child works on a task) for exshyample by making materials easier for the child ro reach or asking questions that will aid in problem solution Tannock (1988) found that maternal dishyrectives assisted children with Down syndrome in more fully participating in the interaction Roach Barratt Miller and Leavitt (1998) reshyported that mothers of children with Down synshydrome were both more directive and more supportive than were other mothers of both mental-age-matched and chronological-ageshymatched typically developing children They found that the combination of maternal directiveshyness and suppOrt elicited more object play and voshycalizations 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 childrens 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 dishyminished According ro tesearchers who focus on the family system (McCubbin amp Patterson 1983) the adaptation of the family to the birth Ot diagshynosis of a child with disabilities can be explained by several facrors including the meaning ascribed to the disability and the internal and external teshySources of the family

Of the many factors thar comprise parental well-being parenting stress appears to be the one

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 childs infant and tOddler years (Shonkoff Hauser-Cram Krauss amp Upshur 1992) Inshycreasing stress levels occur during early childhood (Innocenti Huh amp Boyce 1992) with high stress levels during the middle childhood years (HausershyCram et aI 200l Orr Cameron Dobson amp Day 1993)

These findings are based on families who have received early intervention services however It is possible that such services provide sufficient supshyport CO parents to temper the levels of stress parshyents feel during the infanr and toddler years When the family support services of EI are withshydrawn 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 concomishytant 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 comparishyson co fathers often provide more caregiving funcrions for children during the infant and todshydler years fathers in general report more stress at that time (Hauser-Cram et a 200l) Fathers inshycreasing levels of stress appeat co be moderated by problem-focused coping skills Fathers who apshyproach 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 whatshyever 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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

The Needs of Parents of Young Children with Developmental Disabilities 289

that results in a high probability of subsequent delays Stareshave the option of also providing services to children who are at risk of having subshystantial delays if early intervention services are not provided (20 USc 1432) States have diffishyculty determining which children are at risk and vary substantially in the extent to which sershyvices 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 (eg Downs 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 141 and as indicated in that table most children who exhibit developshymental delays do so because of speech or commushynication problems

An imporrant requirement of IDEA is the deshyvelopment of an individualized education plan (IEP) for children aged 3 or older and of an indishyvidualized family service plan (IFSP) for children in early intervention Like the IEP the IFSP deshylineates the needs and goals for the child but unshylike the IE P the IFSP also specifies family strengths and needs The importance of rhe famshyily as the primary niche in which young children

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 intrushysion into family life (Krauss 1990) the family focus inherent in the legislation reflects contemshyporary 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 disshyability (eg Solnit amp 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

Table I Common Reasons for Intervention Servicesa

Reason Percentageb

Speechcommunication impairmem or delay 41 Prenatalperinatal abnormaliries (eg low birch weight) 19 MotOr impaitment or delay L7

Delayed development (global) L2 Cognitive disorders (eg Down syndrome) 9 Intellectualcognitive impairment or delay 7 Central nervous system disorders (eg cerebral palsy) 7 Social environment fisk factors 4 Socialbehavioral irrtpairmem or delay 4 Sensory impairment (eg vision hearing impairmem) 3

middotSoum Natina Early Intervention Longitudinal Study (US Department of EdJiCation 2000)

bpercentages um to more than 100 because children rnay have more than Ontl rElion for reaipt of ervices

290 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

II sociocultural beliefs about the etiology of the disshyailility (eg the child is a gift to parems who can master the challenge or the childs disability is a punishmem for parems past behaviors) (Garcia

I Coil amp Magnuson 2000) For most parents the knowledge that their infam may exhibit unusual or delayed development requires an adjustment

I but the assumption that all parents will endure chronic sorrow lacks empirical evidence

In the 1960s and 1970s a stage theory was

I proposed to health professionals as a way to preshy

I 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 disappointshyment The third stage occurs when parents reorishyem 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 Behazior Much research has been conducted on caregivers especially mothers of young children with disshyabilities Many studies on the mother-child dyad have been guided by the transactional model (Sameroff amp Chandler 1975) which emphasizes the bi-directional imeractions between a mother and a child This theoretical model does not asshysume thar influences occur only from mother to child bur instead focuses on rhe responses that each has to the other in complex changing patshyterns bullBarnard 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 teshysponsive reactions by mothers rhat are contingent

on childrens behaviors promote positive cognishytive and social-emotional development in chilshydren (Osofsky amp Thompson 2000) In comrast mothers who repeatedly ignore childrens reshysponses or are highly controlling and imrusive imo childrens activities reduce childrens opporshytunities for self-efficacy (Heckhausen 1993)

Research on the mocher-child dyad when the

child has a developmemal disability demonstrates that maternal contingent responsiveness during childrens early years is an imporcant predictor of development of positive cognitive and communishycation skills ovet time (Hauser-Cram Warfield Shonkoff amp Krauss 2001) Such productive mother-child interaction appears to be more challenging in dyads where the child has a disshyability than in other dyads however Children with certain disabilities such as those with Downs syndrome may provide fewer more deshylayed or less appropriate signals to parents durshying interactions (eg Beeghly Perry amp Cicchetti 1989 Landry amp Chapieski 1990) Children with autism and related disabilities may rarely make eye contact with the mocher or caregiver (Hoppes amp Harris 1990) which results in reduced opporshytunities for mutually responsive interaction and joint attention Thus the child with a developshymental disability may display fewer or unusual cues making ir difficult tor a caregiver to respond contingent to the childs actions

Possibly as a result of childrens unusual or unshyexpected cues mothers of children with disabilimiddot 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 activimiddot ties mochers of children with Down syndrome unlike morhers of typically developing children directed rheir childs attention away from the obshyjects [he child was using and toward more chalshylenging 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 291

~uch directiveness could result in either proshybull motive or deleterious outcomes for children

Directiveness could diminish childrens 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 (ie incremental support and guidance as the child works on a task) for exshyample by making materials easier for the child ro reach or asking questions that will aid in problem solution Tannock (1988) found that maternal dishyrectives assisted children with Down syndrome in more fully participating in the interaction Roach Barratt Miller and Leavitt (1998) reshyported that mothers of children with Down synshydrome were both more directive and more supportive than were other mothers of both mental-age-matched and chronological-ageshymatched typically developing children They found that the combination of maternal directiveshyness and suppOrt elicited more object play and voshycalizations 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 childrens 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 dishyminished According ro tesearchers who focus on the family system (McCubbin amp Patterson 1983) the adaptation of the family to the birth Ot diagshynosis of a child with disabilities can be explained by several facrors including the meaning ascribed to the disability and the internal and external teshySources of the family

Of the many factors thar comprise parental well-being parenting stress appears to be the one

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 childs infant and tOddler years (Shonkoff Hauser-Cram Krauss amp Upshur 1992) Inshycreasing stress levels occur during early childhood (Innocenti Huh amp Boyce 1992) with high stress levels during the middle childhood years (HausershyCram et aI 200l Orr Cameron Dobson amp Day 1993)

These findings are based on families who have received early intervention services however It is possible that such services provide sufficient supshyport CO parents to temper the levels of stress parshyents feel during the infanr and toddler years When the family support services of EI are withshydrawn 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 concomishytant 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 comparishyson co fathers often provide more caregiving funcrions for children during the infant and todshydler years fathers in general report more stress at that time (Hauser-Cram et a 200l) Fathers inshycreasing levels of stress appeat co be moderated by problem-focused coping skills Fathers who apshyproach 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 whatshyever 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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

290 CHAPTER I4 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

II sociocultural beliefs about the etiology of the disshyailility (eg the child is a gift to parems who can master the challenge or the childs disability is a punishmem for parems past behaviors) (Garcia

I Coil amp Magnuson 2000) For most parents the knowledge that their infam may exhibit unusual or delayed development requires an adjustment

I but the assumption that all parents will endure chronic sorrow lacks empirical evidence

In the 1960s and 1970s a stage theory was

I proposed to health professionals as a way to preshy

I 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 disappointshyment The third stage occurs when parents reorishyem 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 Behazior Much research has been conducted on caregivers especially mothers of young children with disshyabilities Many studies on the mother-child dyad have been guided by the transactional model (Sameroff amp Chandler 1975) which emphasizes the bi-directional imeractions between a mother and a child This theoretical model does not asshysume thar influences occur only from mother to child bur instead focuses on rhe responses that each has to the other in complex changing patshyterns bullBarnard 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 teshysponsive reactions by mothers rhat are contingent

on childrens behaviors promote positive cognishytive and social-emotional development in chilshydren (Osofsky amp Thompson 2000) In comrast mothers who repeatedly ignore childrens reshysponses or are highly controlling and imrusive imo childrens activities reduce childrens opporshytunities for self-efficacy (Heckhausen 1993)

Research on the mocher-child dyad when the

child has a developmemal disability demonstrates that maternal contingent responsiveness during childrens early years is an imporcant predictor of development of positive cognitive and communishycation skills ovet time (Hauser-Cram Warfield Shonkoff amp Krauss 2001) Such productive mother-child interaction appears to be more challenging in dyads where the child has a disshyability than in other dyads however Children with certain disabilities such as those with Downs syndrome may provide fewer more deshylayed or less appropriate signals to parents durshying interactions (eg Beeghly Perry amp Cicchetti 1989 Landry amp Chapieski 1990) Children with autism and related disabilities may rarely make eye contact with the mocher or caregiver (Hoppes amp Harris 1990) which results in reduced opporshytunities for mutually responsive interaction and joint attention Thus the child with a developshymental disability may display fewer or unusual cues making ir difficult tor a caregiver to respond contingent to the childs actions

Possibly as a result of childrens unusual or unshyexpected cues mothers of children with disabilimiddot 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 activimiddot ties mochers of children with Down syndrome unlike morhers of typically developing children directed rheir childs attention away from the obshyjects [he child was using and toward more chalshylenging 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 291

~uch directiveness could result in either proshybull motive or deleterious outcomes for children

Directiveness could diminish childrens 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 (ie incremental support and guidance as the child works on a task) for exshyample by making materials easier for the child ro reach or asking questions that will aid in problem solution Tannock (1988) found that maternal dishyrectives assisted children with Down syndrome in more fully participating in the interaction Roach Barratt Miller and Leavitt (1998) reshyported that mothers of children with Down synshydrome were both more directive and more supportive than were other mothers of both mental-age-matched and chronological-ageshymatched typically developing children They found that the combination of maternal directiveshyness and suppOrt elicited more object play and voshycalizations 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 childrens 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 dishyminished According ro tesearchers who focus on the family system (McCubbin amp Patterson 1983) the adaptation of the family to the birth Ot diagshynosis of a child with disabilities can be explained by several facrors including the meaning ascribed to the disability and the internal and external teshySources of the family

Of the many factors thar comprise parental well-being parenting stress appears to be the one

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 childs infant and tOddler years (Shonkoff Hauser-Cram Krauss amp Upshur 1992) Inshycreasing stress levels occur during early childhood (Innocenti Huh amp Boyce 1992) with high stress levels during the middle childhood years (HausershyCram et aI 200l Orr Cameron Dobson amp Day 1993)

These findings are based on families who have received early intervention services however It is possible that such services provide sufficient supshyport CO parents to temper the levels of stress parshyents feel during the infanr and toddler years When the family support services of EI are withshydrawn 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 concomishytant 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 comparishyson co fathers often provide more caregiving funcrions for children during the infant and todshydler years fathers in general report more stress at that time (Hauser-Cram et a 200l) Fathers inshycreasing levels of stress appeat co be moderated by problem-focused coping skills Fathers who apshyproach 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 whatshyever 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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

The Needs of IJarents of Young Children with Developmental Disabilities 291

~uch directiveness could result in either proshybull motive or deleterious outcomes for children

Directiveness could diminish childrens 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 (ie incremental support and guidance as the child works on a task) for exshyample by making materials easier for the child ro reach or asking questions that will aid in problem solution Tannock (1988) found that maternal dishyrectives assisted children with Down syndrome in more fully participating in the interaction Roach Barratt Miller and Leavitt (1998) reshyported that mothers of children with Down synshydrome were both more directive and more supportive than were other mothers of both mental-age-matched and chronological-ageshymatched typically developing children They found that the combination of maternal directiveshyness and suppOrt elicited more object play and voshycalizations 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 childrens 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 dishyminished According ro tesearchers who focus on the family system (McCubbin amp Patterson 1983) the adaptation of the family to the birth Ot diagshynosis of a child with disabilities can be explained by several facrors including the meaning ascribed to the disability and the internal and external teshySources of the family

Of the many factors thar comprise parental well-being parenting stress appears to be the one

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 childs infant and tOddler years (Shonkoff Hauser-Cram Krauss amp Upshur 1992) Inshycreasing stress levels occur during early childhood (Innocenti Huh amp Boyce 1992) with high stress levels during the middle childhood years (HausershyCram et aI 200l Orr Cameron Dobson amp Day 1993)

These findings are based on families who have received early intervention services however It is possible that such services provide sufficient supshyport CO parents to temper the levels of stress parshyents feel during the infanr and toddler years When the family support services of EI are withshydrawn 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 concomishytant 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 comparishyson co fathers often provide more caregiving funcrions for children during the infant and todshydler years fathers in general report more stress at that time (Hauser-Cram et a 200l) Fathers inshycreasing levels of stress appeat co be moderated by problem-focused coping skills Fathers who apshyproach 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 whatshyever 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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

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 relshyatively neglected in studies of children with disshyabilities (Lamb amp 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 Hontby (1995) conshycludes that they paint a negative picture (p 105) For example Wikler Wasow and Hatfield (1981) suggest that fathers are more afshyfected (than mothers) by the physical aspects of a childs 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 impresshysions and most are dated in terms of contemposhyrary 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 todays family

A few investigations have focused on rhe posishytive changes that have occurred in individuals lives as a result of parenting a child wirh a disshyability 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 reshysearch attention is increasingly focused on the enshyduring 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 reshylationships (Seligman 1999) Early interactions between siblings provide a context for the develshyopment 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 adshyditional complexity For the child with a disabilshyity who may experience limited peer interaCtion and few friendships (Gresham amp MacMillan 1997) the sibling relationship may provide the primary context for positive socialization experishyences with peers Furthermore the nondisabled sibling may assume the role of caretaker and comshypanion in adulthood (Seltzer Greenberg Krauss amp Gordon 1997 Seltzer amp Krauss 2001) Clearly a childs 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 maladjustshyment Traditionally investigarors hypothesized that the presence of a child with a disability is a source of developmental risk for other children in the family (eg Farber 1959) Much early work indicated thar sisters of children with developshymental disabilities often assumed much greater caregiving and household responsibility than their peers This disproportionate responsibility

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

293 Siblings of Children with Developmental Disabilities

was considered (0 be related (0 increased levels of d(j)Jression and anger (Farber 1959) a higher inshycidence 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 beshyfore 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 undershystanding of the meaning of disability (Lamorey 1999)

Furthermore several methodological criticisms of this work exist First studies were largely tetshytospective 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 anecshydotal evidence and self-report They did nor emshypirically 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 inshyvolved in caregiving activities such as babysicting or helping with feeding dressing or bathing (McHale amp Gamble 1989) even when the typishycally developing sibling is younger (Stoneman Brody Davis Crapps amp Malone 1991) However

generally speaking female children appear (0

shoulder greater responsibility in the home reshygardless of the presence of a sibling with a disshyability (McHale amp Gamble 1989 Sroneman Brody Davis amp Crapps 1987) Gender aside when ocher home responsibilities such as houseshyhold chores and self-care activities were considshyered Cuskelly and Gunn (1993) found no difference in levels of responsibility between sibshylings 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 simultaneshyously 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 relashytion between amount of time spent in childcare activities and anxiety they also reponed that deshypression self-esteem and conduct problems were not related to home responsibilities Others report a positive telation between responsibility and soshycioemotional functioning of siblings For examshyple Cuskelly and Gunn (1993) found that sisters of children with disabilities exhibited fewer conshyduct problems when they had more responsibilishyties in the home Finally there is some indication that when typically developing siblings of chilshydren with disabilities have greater caregiving reshysponsibility 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 adjustshyment problems because they receive less attention from parents than their brothers and sisters (Stoneman 2001) This is supported by the litershyature 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 amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

294 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

tith deleterious sibling outcomes (Brody Stoneman amp Burke 1987) Nonetheless evidence

is mixed about whether siblings of children with disabilities actually receIve less actention (Kaminsky amp Dewey 2001 McHale amp Gamble 1989 Stoneman et aI 1987) Furthermore studshyies on siblings of children with disabilities do nor clearly indicate that the effects of differemial atshytention are detrimental Corter and colleagues (Corter Pepler Stanhope amp 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 acceptshying of it and largely recognized and appreciated their parems attempts at jusrness

Sibling Interactions Interactions between siblings when one has a deshyvelopmental 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 acshytivities 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 cooperashytive interaction with their brothers and sisters when compared to siblings of typically developshying children (Dallas Stevenson amp McGurk 1993 Stoneman et aI 1987) Additionally when compared ro siblings of typically developing chilshydren 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 amp Coner 1987)

There is substamial evidence that the sibling relationship develops differemly when one memshyber has a disability In dyads in which (he rypishycally 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 minishymized over time bur rather may become more proshynounced (Stoneman 2001)

When the child with a disability is the older sibling the developmem of the sibling relationshyship 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 andor funCtional skills eventually assuming the domishynam role (Abramovirch et aI 1987 Brody Stoneman Davis amp Crapps 1991 Dallas et aI 1993 Stoneman et aI 1991) Although the deshyvelopmem of the relationship becween children with disabilities and their siblings may not be normative there is no evidence that chis asymmeshytry 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 sibshylings of children with disabilities consider the complexity of both the sibling relationship and [he family concext and recognize a range of possishyble psychological outcomes It is imponant co unshyderstand the differenc processes and mechanisms by which these potencial outcomes occur (McHale amp Gamble 1989) for example Dyson (L989) compared older siblings of children with disabilishyties to older siblings of typically developing chilshydren 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 reshylated to borh child and family characteristics [0

other words Dyson found that for bmh groupS those with and without siblings with disabilicies

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

295 Siblings of Children with Developmental Disabilities

there ~as great variabiliry in adjustmem and beshyhavior 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 relationshyship social support and the familys 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 inshycluding (he rype and severity of the siblings disshyability and rhe temperamem of both siblings however evidence increasingly poims (0 the imshyportance of the family comext Parents psychoshylogical well-being imeractions and responses (0

stress affect the well-being of the individual chilshydren within the family In a 3-year longitudinal study siblings of children with pervasive developshymental delay (POD) exhibited more behavior problems than either the siblings of children with Down syndrome or those of typically developing children (Fisman Wolf Ellison amp Freeman 2000) Sibling behavior problems in all groups however were related ro parental stress and parshyents of children with POD were found co mainshytain the highest stress levels ovet time McHale and Gamble (1989) found no direct connections between the characteristics of children with disshyabilities and th well-being of theit older brothers and si~ters bur they did find that siblings who exshyperienced more negative imeractions with their mothers exhibired more depression anxiety and low self-esteem Thus family environmem is a

critical factot in understanding sibling adjustshyment to childhood disability

Some recent studies have found that the presshyence of a child with a disability has a positive imshypact on family climate and sibling adjustment In one study siblings of children with Down synshydrome were collectively found co have above avershyage 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 siblings social competence

Although family context is important in unshyderstanding 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 disabilshyity more positively when they perceive their famshyilies as communicative and emotionally responsive (Weinger 1999) This indicates that in families in which members are safely able to exshypress 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 disabilshyity (Eisenberg Baker amp Blacher 1998 Grossman 1972 Kaminsky amp Dewey 2001 Pitshyten Care amp Loots 2000 Roeyers amp Mycke 1995 Van Riper 2000) These children rend to rate their sibling relarionships more positively than do comparison children (Roeyers amp M ycke 1995) report fewer conflicts and express greater admitashytion for their siblings (Kaminsky amp 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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

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 sibshylings teported that they sometimes worried about their siblings health or future or both (Pit-ten Cate amp 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 chilshydren may benefit from support groups (hat adshydress (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 relationshyships more positively when they had more knowlshyedge about the nature of autism In a sample of Dutch children aged 10 to 19 years with siblings wirh physical disabilities many of the parricishypants were unable to provide details regarding their siblings disabilities but when given the opshyportunity asked many questions about medical matters (Pit-ten Cate amp Loots 2000) This is a further indication that siblings may need a relishyable and accessible source of information about disabilities outside of the family health care proshyfessionals could be a source of such information

Siblings may also benefit from services targeted a( supporting their psychological well-being parshyticularly in the presence of multiple risk factors A group of low-income children all having a sibling with a developmental disability demonstrated deshycreased 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 ofchildren who teceived no inshytervention 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 evshyidence interventions focused on reducing parental stress anxiety and depression and increasing famshyily 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 proshymote the health and optimal development of the children as well as to support adaptive parenting and positive functioning of their families (Shonkoff amp Meisels 2000) A wide range of disshyciplines 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 142) 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

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

297 Early Intervention Services

Table q2 Types of Early Intervention Services Commonly Provided to Children Familiesa b

Type Percentage

Service coordination 80 Speechllanguage therapy 53 Special instruction 44 Occupational therapy 39 Physical therapy 38 Developmental monitoring 38 Health-related services 25 Family training 20 Other family support (eg counseling) 14 Audiology 14 Social work services 12

ServlceI fT1(jst commonly prl)llided within the first 6 months 0 enrollment

Soum National Early Intervention Longitudinal Study (US 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 imporshytance of the firsr 3 years of life in shaping develshyopmental outcomes (Gutalnick 1998)

Notwithstanding the growing emphasis on and awareness of EI as an important factor in proshymoting 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 nashyture of services themselves and the extent to

which both quantitative and qualitative apshyproaches are needed ro understand family processes (Hauser-Cram Warfield Upshur amp

Weisner 200e) Hisrorically evaluation tesearch on El focused almost exclusively on cognitive outshycomes with a neglect of socioemotional functionshying of children and families (Shonkoff amp

Hauser-Cram 1987) There appears to be considshyerable agreement that childten with established disabilities who receive EI demonstrate less deteshyriotation in theit scores on standardized tests of intellectual ability than their peers who do not reshyceive comprehensive services (Guralnick 1998 Guralnick amp Bricker 1987 Hines amp Bennett 1996 Spiker amp Hopmann 1997) These advantashygeous 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 imshyportant in its own right because positive adjustshyment 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 supshyportive context for parenting is an aim of most EI

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

298 CHAPTER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABIUTlES AND THElR FAMILIES

bull programs In one of the few studies on parental outcomes associated with EI participation Warfield and colleagues (Warfield Hauser-Cram Krauss Shonkoff amp Upshur 2000) found that at (he end of the EI experience mothers who had reshyceived more hours of EI services reported imshyproved 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 detershymine which features of EI programs were most efshyfective researchers at the Early Intervention Research Insritute conducted a series of longitudishynal 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 chilshydren who received intensive family-centered inshytervention services 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 intervenshytion (Dunst amp 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 childs developmental c9mpetency at entry into EI and the home envishyronment were stronger predictors of developmenshytal outcomes than were specific program variables In other words children who entered El with the greatest delays tended to show the least improveshyment in developmental scores but the quality of the home environment and parental expectations

also comributed significantly to post-intervemion developmental sratus These are important findshyings for several reasons First that entry-level child characteristics were the most influential preshydiCtor 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 necesshy

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 comshyprehensive EI programs [n contrast secondshygeneration research addresses more specific issues that are aimed at optimizing individual outcomes infDrming program design and increasing our unshyderstanding 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 reshysearch 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 diffishycult 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 fedshyeral legislation allow the states latitude in choosshying a lead agency it also gives them considerable discretion in the determinarion of who is eligible for services Alrhough all states must serve chilshy

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

299 Early Intervention Services

dren with established disabilities and developmenshytdt 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 guideshylines abour the minimal extent of delay required for a child to be eligible for EI based on the childs age (eg 15 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 15 standard deviations at or below the mean or below the 7th percentile in one or more areas of development based on a standard asshysessment (Utah Department of Health 1999) In Alabama infants or toddlers must be delayed by at least 25 in their cognitive communicative soshycial emotional or adaptive development to be elishygible 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 anshyother Hence although there exists a federal manshydate to serve infants and toddlers with disabilities (here is little equity with regard to who may parshyticipate in EI ptograms (Bailey 2000)

Additionally there is considerable variability among states along several other dimensions Specifically states differ with regard to (he numshyber 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 unshyder contract from the state lead agency which is responsible for intake and for connecting families with the local service provider This system proshy

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 reshysponsible for establishing an EI system That sysshytem varies widely from county to county one county may have a single entry point to EI sershyvices and the adjacent county may offer several points of entry

Any general discussion of EI and its effectiveshyness is made more difficult by the heterogeneous nature of the children and families who particishypate in EI services State differences aside chilshydren 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 represenshytative sample of more than 5000 children and their families (Hebbeler et at 2001 US 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 synshydrome spina bifida or homelessness to name bur four These descriptors can be classified into dishyverse categories such as sensory impairmems congenital disorders cemral nervous system disshyorders and social environment risk factors (Hebbeler et al 200 l US 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 difshyferem types of practitioners and professionals freshyquently 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

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

300 CHAI)TER 14 YOUNG CHILDREN WITH DEVELOPMENTAL DISABILITIES AND THEIR FAMILIES

middotenvironments from the home to community setshybull tings such as childcate centers to segregated selfshy

contained programs Goals may focus on improving cognitive outcomes communication skills physical functioning or social and emoshytional competencies A systemwide objective of EI is that children and their families receive a packshyage 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 fragmenshytation 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 interdisshyciplinary 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 deshyvelopment 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 deshyvelopmental systems model of EI (Guralnick 2001)~

FAMILY

The developmenral systems model recognizes thar the family is the primary context of developshy

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 interacshytions through the types of experiences that are made available to the child and by ensuring the childs health and safety These three patterns are largely determined by both personal characterisshytics of the family such as psychological well-being and intellectual ablity as well as environmental characterisrics such as the availability of social suppOrt and the familys financial resources Furthermore this model adopts a transactional perspective (Sameroff amp Fiese 2000) by recognizshying rhat these factors interact with child characshyteristics such as the nature and severity of a childs disability and the childs individual temshyperament 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 supshyponing a family ecology that optimizes child deshyvelopment EI programs roUtinely include services focused on providing support and informarion to

family members including memal healrh sershyvices counseling and educational programs foshycused 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 imporshytance of Other more distal contexts of developshyment 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 underslOod

that one role of E[ is (Q enable young children with disabilities (Q participate in the same develshyopmental contexts as theIr typically developing

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

References 301

bull ~ peers (McCollum 2002) including daycare and

preschool settings Toward this end practitioners make every attempt to provide EI services in inshyclusive natural environments (Walsh ROllS amp

Lutzer 2000) Thus to the maximum extent posshysible 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 inteshygration at the systems leveL

Ers focus on family and community contexts draws heavily on current theories of human develshyopment recognizing that the factors that influshyence optimal development fot childten with and without disabilities are many and diverse and ofshyten interact in complex ways Clearly no single provider Ot agency can address all of these factors or the wide array ofdevelopmental needs that may be presented by the heterogeneous community of children and families who participate in EI proshygrams To provide the comprehensive individualshyized package of services that has become the hallmark of the EI system an integrated multishydisciplinary system of services consisting of mulshytiple 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 formashytion of parent-professional partnerships that recshyognize parents as cocoordinators and co-providers of services for their children is key to the success of EI seivices (Turnbull Turbiville amp 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 overshylooked but important part of the provision of sershyvices (Garcia Coli amp Maguson 2000 Super amp

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 heterogeshyneous 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

References

Abbott D amp Meredith W (986) Strengths of parenrs with retarded children Family Relatiom 35 371-375

Abramovitch R Stanhope L Pepler D amp Correr C (1987) The influence of Downs syndrome on sibling interaction Journal ofChild Prychology and Psychiatry 28 865-879

Alabama Departmem of Rehabilitation Services (2003) Aabamaf Early fntenentiotJ SYftem General informashytion Retrieved Augusr 62003 from httpwwwrehab state al uslhfJ11leferviml AEfSIGeneral+ nform

Bailey D B (2000) The federal role in early intervenrion Prospects for the future Topif in Early Childhood Speshycial Education 20(2) [-78

Barnard K E Hammond M A Booth C 1 [lee H L Mitchell S K amp SpIeker S J ([989) t-Lclr(01enr and meaning of parent-child interaCtion L J Morshyrison C Lord amp D P Keating (Eds) PJed developshymental pJychology Volume 3 (pp 39-80) New York Academic Press

302 CHAPTER I4 YOUNG CHILDREN WITH DEVElOPMENTAL D[SABILITIES AND THEIR FAMILIES

BarOlt-Cjlhen S Cox A Baird G Swe(cenhamj Nighringale N Morgan K Drew A amp Charman T (1996) Psychological markers in rhe detecrion of aucism in infancy in a large population Britiih jourshynalofPsychiatry 168158-163

Beeghly M Perry B M amp Cicchetti D (1989) Structural and affective dimensions of play developmenr in young children with Down syndrome International journal of Behavioral Development 12 257-277

Blacher] (1984) Sequential stages of paremal adjustment to rhe birrh of a child wirh handicaps Fact or artishyfact Mental Retardation 22 55-6S

Brody G H Stoneman Z amp Burke M (1987) Child temperaments maternal differential behavior and sibling relationships Developmental Psychology 23

354-362

Brody G H Sroneman Z bull Davis C H bull amp Crapps] M (1991) Observations of rhe role relations and behavshyior between older children with mental retardation and their younger siblings Americanjournal ofMental Retardation 95 527-536

Bronfenbrenner U (1979) The ecology ofhuman development Experimlmts by nature and design Cambridge MA Harvard University Press

Bronfenbtenner U (1986) Ecology of the family as a conshyrext for human development Research perspectives Developmental PIychology 22 723-742

Corter C Pepler D Stanhope L amp Abramovitch R (1992) Home observations of mothers and sibling dyads comprised of Downs syndrome and nonhandishycapped children Canadian journal ofBehavioural Scishyence 24 1-13

Crawley S bull amp Spiker D (983) Morher-child interactions involving rwo-year-olds with Down syndrome A look at individual differences Child De1elopment 54 1312-1323

Cuskelly M (1999) Adjustment of siblings of children with a disability Methodological issues International journal for the ldvancement ofCoumelling 21 111-124

Cuskelly M amp Gunn P (1993) Marernal repom of behavshyior of siblings of children with Down syndrome Americanjournal ofMental Retardation 97 521-529

Dallas E Stevenson j amp McGurk H (993) Cerebralshypalsied childrens interactions with siblings II Interactional structurejournal ofChild Psychology and Psyhiatry 34 649-671

Damiani V B (1999) Responsibility and adjustment in sibling of children with disabilities Update and review Families in SOliety 80 34-40

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Dyson L L (1989) Adjustment of siblings of handicapped children A comparison journal ofPediatric Psychology

14215-229

Dyson L L Edgar E amp Crulc C (1989) Psychological predictors of adjustment of siblings of developmenshytally disabled children Americanjournal ofMental Retardation 94 292-302

Eisenberg L Baker B L amp Blacher] (1998) Siblings of children with mental retardation living at home or in residential placemenrjournal ofChild Psychology and PJychiatry and Allied Disciplines 39 355-363

Farber B (1959) The effects of severely retarded children on rhe family sysrem Monographs 0the Society for ReJearch in Child Development 24 (2 Serial No 71)

Fisman S Wolf L Ellison D amp freeman T (2000) A longitudinal smdy of siblings of children with chronic disabilities Canadian journal ofPlychiatry 45369-375

Frith U (2003) Autifrtt Explaining the enigma Malden MA Blackwell

Garcia Coli C amp Magnuson K (2000) Cultural differshyences as sources of developmental vulnerabiliries and resources (n J P Shonkoff amp S j Meisels (Eds) Handbook ofearly childhood intervention (2nd ed pp 94middot-114) New YOtk Cambridge UniverSltr Press

Garwood S G fewell R R amp Ncsworth J T (1988) Public Law 94-142 You can get there from here l TopshyICI In Early Childhood Special Education 8 1-middot1 1

Gath A (1973) The school age siblings of mongol chilshydren BritishjoILrnalofPrychiiltry 123 161--167

Gresham EMbull amp MacMillan D L (1997) Social compeshytence and affective characreristics of students with mild disabilities Review of Educational Research 76 377-415

Grossman F K (1972) Brothetl and lister of retarded (hilshydren An exploratory study Syracuse NY Syracuse Unimiddot verslty Press

Guralnick M J (1997 J Second-generation tesearch n rbe field of early intervention In M j Guralnick (Ed) The effeailenm ofearly intenenlwll (PI 3-20) Baltishymore Brookes

Guralnick M J (1998) Effectiveness ofearly intervention for vulnerable children A developmental perspecrive [lmericall journal 011 Mental Retardation 102 3I9-)4j

Gutalnick M J (2000) Early childhood tntervenrion Evoshylution of a sysrem Focltf on AutiJm arJd Other D~eloPshymaual Disabilitie 15(2)68-79

Guralnick M J (2001) A developmemal systems model for early intervention I nfantl Itd )lImg Children 14(2)

I-IS

-References 303

ltGuralnickM J amp Bricket D (1987) The effectiveness of early intervention for children with cognitive and general developmental delays In M J Guralnick amp

E C Bennen (Eds) The effectiveness ofearly tntervention for at-risk and handicapped children (pp 115-173) San Diego CA Academic Press

Hack M Wright L L Shankaran S amp Tyson J E (1995) Very low birth weight outcomes of the National Institute ofChild Health and Human Development Neonatal Network November 1989 to October 1990 AmericanJournal of Obstetrics and Gyneshycology 172 457--464

Hanson M J (1998) Echnic culrutal and language divershysity in intervention settings In E W Lynch amp M J Hanson (Eds) Developing cross-cultural competence A guide for working with young children and their families (2nd ed pp 3-22) Baltimore MD Brookes

Hauser-Cram P Warfield M E Shonkoff J P amp Krauss M W (2001) Children with disabilities A longitushydinal study of child development and parent wellshybeing Monographs of the Society for Research in Child Development 66 (3 serial No 266)

Hauser-Cram P Warfield M E Upshur C C amp Weisshyner 1 S (2000) An expanded view of progtam evalshyuation in early childhood intervention In J P Shonkoff amp S J Meisels (Eds) Handbook ofearly childhood intervention (2nd ed pp 187-509) New York Cambridge University Press

Hebbeler K Spiker D Wagner M Cameto R McKenna P amp SRI International (1999) State-toshystate variations irJ early intmention lYtems Menlo Park CA SRI Imernarional

Hebbeler K Wagner M Spiker D Scarborough A Simeonson R amp Collier M (200 I) A first look at the characterirlies achildren and families erJtering early intershyvention services (NEILS Data Report I) Menlo Park CA SRI InternationaL

Heckhausen J (1993) The developmenr of mastery and irs perception within caretaker-child dyads In D J Messet (Ed) Maifery mutivltwn ill early childhood Development mealuremtm and Jotitl processes (pp 55~-79) London Routledge

Hines S amp Bennett F (1996) Etfecriveness of early intershyvention for children With Down syndrome AIerttal Retardation and Developmental Dhabilitm ReJearch Reviews 2 96middot-10 I

Hoppes K amp Harris S L (1990) Perceptions of child arrachmenr and marernal gtatification in mothers of childten wirh aucism and Down syndtomejournal of ClinicalchildPsyhology 19 )65-370

Hornby G (1995) Fathets views of the effects on their families of children with Down srndtomeJournalof Child atJd Family Sludief 4( I) 103-117

Innocemi M S Huh K amp Boyce G (1992) Families of children with disabilities Notmative dara and other considerations on parenting stress Topics in Early Childhood Special Education 12 403--407

Kaminsky L amp Dewey D (200l) Sibling relationships of children with aurismJournal of Autism and Developshymental Dil0rders 31399--410

Krauss M W (1990) A new precedent in family policy The individualized family service plan Exceptional Children 56 388-395

KochanekT 1 amp Bub S L (1998) Influential factors in the urilization of early inrervenrion servicesJournal of Early Interventioll 2 I 323-338

Kubler-Ross E (1997) On death and dying New York Scribner

Lamb M E amp Billings L A (199 7) Fathers of children with special needs In M E Lamb (Ed) The role ofthe father in child development (pp 179-190) New York Wiley

Lamorey S (1999) Parentificarion of siblings of children with disabiliry or chronic disease In N D Chase (Ed) Burdened children Theory research and treatment ofparentification (pp 75-9D Thousand Oaks CA Sage Publicarions

Landis L J (1992) Marital employmenr and childcare stashyrus of mothers wirh infanrs and coddlers wirh disabilshyiries TopiJ in Early Childhood Spaial Education 12 496-middot507

Landry S H amp Chapieski M L (1990) Joint atcenrion of six-month-old Down syndrome and pcererm infants I Arrcntion to roys and morher AmericanJournal on Mental Retardation 91 488--498

LaParo K M Olsen K amp Pianra R C (2002) Special education eligibility Developmenral precursors over rhe firsr thteeyears of life Exceptional Children 69 55-66

Lepper M R (1981) Intrinsic and exrrinsic morivarion in children Detrimental efiecrs of superfluous social controls In W A Collins (Ed) Minnesota symposium on child psychology Volume 14 Minneapolis MN Unishyversiry of Minnesota Press

Lyon G R (1996) Learning disabilities The Future ofChilshydren 6 54-76

Marfo K (1990) Marernal direcriveness in inreractions wich mentally handicapped children An analytical commentaryJournal of Child Psychology and Psychiatry 31531-549

Marfo K Dinero 1 Browne N Gallanr D Smyrh R amp Corbett A (1992) Child program and family ecological variables in early inrervenrion Early Edushycation and Development 3 27--44

Mahoney G Fors S amp Wood S (1990) Maternal direcshyrive behavior revisited AmericanJournal on Menial Retardation 94 398--406

Massachusetcs Deparrmenr of Public Health (1998) MassashychusettJ Early Intervention OperalionalStandards Retrieved on Augusr 6 2003 from wwwstalemaUS dphtch eiopltndpdf

McCollum J A (2002) Influencing che developmenr of yOUrtg children wirh disabilities Current themes in

-References 303

ltGuralnickM J amp Bricket D (1987) The effectiveness of early intervention for children with cognitive and general developmental delays In M J Guralnick amp

E C Bennen (Eds) The effectiveness ofearly tntervention for at-risk and handicapped children (pp 115-173) San Diego CA Academic Press

Hack M Wright L L Shankaran S amp Tyson J E (1995) Very low birth weight outcomes of the National Institute ofChild Health and Human Development Neonatal Network November 1989 to October 1990 AmericanJournal of Obstetrics and Gyneshycology 172 457--464

Hanson M J (1998) Echnic culrutal and language divershysity in intervention settings In E W Lynch amp M J Hanson (Eds) Developing cross-cultural competence A guide for working with young children and their families (2nd ed pp 3-22) Baltimore MD Brookes

Hauser-Cram P Warfield M E Shonkoff J P amp Krauss M W (2001) Children with disabilities A longitushydinal study of child development and parent wellshybeing Monographs of the Society for Research in Child Development 66 (3 serial No 266)

Hauser-Cram P Warfield M E Upshur C C amp Weisshyner 1 S (2000) An expanded view of progtam evalshyuation in early childhood intervention In J P Shonkoff amp S J Meisels (Eds) Handbook ofearly childhood intervention (2nd ed pp 187-509) New York Cambridge University Press

Hebbeler K Spiker D Wagner M Cameto R McKenna P amp SRI International (1999) State-toshystate variations irJ early intmention lYtems Menlo Park CA SRI Imernarional

Hebbeler K Wagner M Spiker D Scarborough A Simeonson R amp Collier M (200 I) A first look at the characterirlies achildren and families erJtering early intershyvention services (NEILS Data Report I) Menlo Park CA SRI InternationaL

Heckhausen J (1993) The developmenr of mastery and irs perception within caretaker-child dyads In D J Messet (Ed) Maifery mutivltwn ill early childhood Development mealuremtm and Jotitl processes (pp 55~-79) London Routledge

Hines S amp Bennett F (1996) Etfecriveness of early intershyvention for children With Down syndrome AIerttal Retardation and Developmental Dhabilitm ReJearch Reviews 2 96middot-10 I

Hoppes K amp Harris S L (1990) Perceptions of child arrachmenr and marernal gtatification in mothers of childten wirh aucism and Down syndtomejournal of ClinicalchildPsyhology 19 )65-370

Hornby G (1995) Fathets views of the effects on their families of children with Down srndtomeJournalof Child atJd Family Sludief 4( I) 103-117

Innocemi M S Huh K amp Boyce G (1992) Families of children with disabilities Notmative dara and other considerations on parenting stress Topics in Early Childhood Special Education 12 403--407

Kaminsky L amp Dewey D (200l) Sibling relationships of children with aurismJournal of Autism and Developshymental Dil0rders 31399--410

Krauss M W (1990) A new precedent in family policy The individualized family service plan Exceptional Children 56 388-395

KochanekT 1 amp Bub S L (1998) Influential factors in the urilization of early inrervenrion servicesJournal of Early Interventioll 2 I 323-338

Kubler-Ross E (1997) On death and dying New York Scribner

Lamb M E amp Billings L A (199 7) Fathers of children with special needs In M E Lamb (Ed) The role ofthe father in child development (pp 179-190) New York Wiley

Lamorey S (1999) Parentificarion of siblings of children with disabiliry or chronic disease In N D Chase (Ed) Burdened children Theory research and treatment ofparentification (pp 75-9D Thousand Oaks CA Sage Publicarions

Landis L J (1992) Marital employmenr and childcare stashyrus of mothers wirh infanrs and coddlers wirh disabilshyiries TopiJ in Early Childhood Spaial Education 12 496-middot507

Landry S H amp Chapieski M L (1990) Joint atcenrion of six-month-old Down syndrome and pcererm infants I Arrcntion to roys and morher AmericanJournal on Mental Retardation 91 488--498

LaParo K M Olsen K amp Pianra R C (2002) Special education eligibility Developmenral precursors over rhe firsr thteeyears of life Exceptional Children 69 55-66

Lepper M R (1981) Intrinsic and exrrinsic morivarion in children Detrimental efiecrs of superfluous social controls In W A Collins (Ed) Minnesota symposium on child psychology Volume 14 Minneapolis MN Unishyversiry of Minnesota Press

Lyon G R (1996) Learning disabilities The Future ofChilshydren 6 54-76

Marfo K (1990) Marernal direcriveness in inreractions wich mentally handicapped children An analytical commentaryJournal of Child Psychology and Psychiatry 31531-549

Marfo K Dinero 1 Browne N Gallanr D Smyrh R amp Corbett A (1992) Child program and family ecological variables in early inrervenrion Early Edushycation and Development 3 27--44

Mahoney G Fors S amp Wood S (1990) Maternal direcshyrive behavior revisited AmericanJournal on Menial Retardation 94 398--406

Massachusetcs Deparrmenr of Public Health (1998) MassashychusettJ Early Intervention OperalionalStandards Retrieved on Augusr 6 2003 from wwwstalemaUS dphtch eiopltndpdf

McCollum J A (2002) Influencing che developmenr of yOUrtg children wirh disabilities Current themes in

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McHale S M amp Gamble W C (1989) Sibling relationshyships of children with disabled and nondisabled brothers and sisters Developmental Psychology 25 421-429

Meisels S) (1991) Dimensions of early identification journal of Early Intervention 15 26-35

Meisels S) amp Shonkoff) P (2000) Early childhood intervemion A continuing evolmlon In j E Shonshykoff amp S J Meisels (Eds) Handbook ofearly childhood intervention (2nd ed PI 3-31) New York Camshybridge Univetsity Press

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Orr R R Cameron~ Sj Dobson L A amp Day D M (1993) Age-related changes in stress experienced by families wirh a child who has developmemal delays Mental Retardation 31171-176

Osofskyj D amp Thompson M D (2000) Adaprive and maladaptive parenting Perspectives on risk and proshytective factors In) P Shonkoff amp S J Meisels (Eds) Handbook ofearly childhood intervention (2nd ed PI 54-75) New York Cambridge University Press

Phillips R S C (l999) Intervention with siblings of chilshydren with developmental disabilities from economishycally disadvantaged families Families in Sodety 80 569-577

Pic-ten Care L M amp Loors G M P (2000) Experiences of siblings of children with physical disabilities An empirical invescigarion Difability and Rehabilitation 22 399-408

Roach M A Barran M Miller) E amp Leavitt L A (l998) The strucrure of mmher-child play Young children wirh Down syndrome and rypically developshying children Developmental Psychology 34 77-S7

Rbeyers H amp M ycke K (995) Siblings of a child with autism wirh mental retardation and with normal development Child Care Health mid Development 21 305-319

Sameroff A J amp Chandler M J (1975) Reproductive risk and the cominuum of careraking casualiry In F D Horowitz M Herhetingron S Scarr-Salapark amp G

4 (pp 187-244) Chicago Universiry of Chicago Press

Sameroff A j amp Fiese B H (2000) Transactional regulashytion The developmentaL ecology of early intervenshytion In J P Shonkoff amp S j Meise Ls (Eds) Handbook ofearly childhood intervention (2nd ed pp l35-159) New York Cambridge University Press

Schilling R E Schinke S P amp Kirkham M A (1985) Coping wirh a handicapped child Differences between mothers and farhers Social Science and Medishycine 21 857-S63

Scorgie K amp Sobsey D (2000) Transformational outcomes associared wirh parenting children who have disabilishyties Mental Retardation 38 (3) 195-206

Seligman M (l999) Childhood disability and the family In V L Schwean amp D H Saklofske (Eds) Handbook ojpsychosocial charactertstiu ofexceptional children (pp Ill-II3) New York Kluwer AcademicPlenum Publishers

Selrzer M M Greenberg J S Krauss M W amp Gordon R M (1997) Siblings of adults with mental retatdashycion or mental illness Eifects of lifestyLe and psychoshylogical wellbeing Family Relations Interdisciplinary jourlJal of ApplIed Family Studies 46 395-405

Seltzer M M amp Krauss M W (2001) Quality oflife of adults with meneal retardation developmemal disshyabilities who live with family Mental Retardation and Det-middotelopmental Duabilllw Research Review) 7 105-middot114

ShonkotT J P amp Hauser-Cram P (1987) Early intervenshytion for disabled tntants and cheir families A quantishytative analysis PltditttFt 80 650-658

Shonkoffj P HausermiddotCram P Krauss M W amp Upshur C C (992) Developmenr of infants with disabili~ ties and their Ilmiltes Monograph of the Society fOY ReJean-h in Child Df1Jelopment 57 (6) (Serial No 230)

Shonkoff j P amp Marshall P C 0(00) The biology of developmental vulnerabIlity [n j P Shonkoff amp S j Meisels (Eds) Hndbo) ofearly fhildhood intervention (2nd ed pp ) ) i) New York Cambtidge Univershysity Press

Shonkoffj E amp Meisel S) (2000) Preface In) P Shonkoff amp S) Meieis (Eds) Handbook ofearly childshyhood intenentioll (2nd ed pp xvii-xviii) New York Cambridge University Ptess

Solnit A j amp Stark M H (961) Mourning and the birth of a defective chIld PYfhoanalytic Study 0the Child 6 i2Vi)7

Solomon R (1995) PedIatriCIans and early intervention Everyrhing you Ieed to know but are tOO busy to ask inanti and FlJin Cluldren 7(j) 38-5 L

Solomon R Cloughen S L Shaffer D Hofkosh f) amp

Edwards M (l99 j) Communiry-based developmenshy

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Spiker D amp Hopmann M R (1997) The effectiveness of early intervencion for children wirh Down syndrome In M J Guralnick (Ed) The effictivenm ofearly intershyvention (pp 27 l-305) Baltimore Brookes

Stanton-Chapman T L Chapman D A amp Scott K G (2001) Idemification of eady tisk factors for learning disabilities Journal of Early Intervention 24 193-206

Sroneman Z (2001) Supporting positive sibling relationshyships during childhood Mental Retardation and Develshyopmental Disabilities Ruearch Reviews 7 134-142

Sroneman Z Brody G H Davis C H amp Crapps] M (1987) Mentally retarded children and their sameshysex siblings Naturalistic in-home observations AmericanJournal of Mental Retardation 92 290-298

Stoneman Z Brody G H Davis C H Crapps] M amp

Malone D M (1991) Ascribed role relations between children with memal retardation and their younger siblings AmericanJoumal ofMental Retardashytion 95 537-550

Super C M amp Harkness S (1997) The cultural structurshying of child developmem In] W Berry Y P Poorringa J Pandey P R Dason amp T S Saraswathi (Vol Eds) Handbook ofcrOJJ-cultural psychology Volume 2 Baric procesrcs and hllman development (pp 1-39) Boston MA Allyn amp Bacon

lannock R (1988) Control and recipwcity imeracrions with Down syndrome and normal children In K Marko (Ed) Parent-child interaction and dnltelopmenshytal disabilities Theory research and intervention (pp 162-180) New York Praeger

Turnbull A P Turbiville V amp Turnbull H R (2000) Evolution of familyprofessional partnerships Collecshytive empowetmenc as the model for the eady twentyshyfirst cenmry In J P Shonkoff amp S J Meisels (Eds) Handbook ofearly childhood intervention (2nd ed pp 630-650) New York Cambridge University Press

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US Departmenr of Education (2000) Twenty-second annual report to congreH on the implementation ofthe I ndividllals with Disabilities Education Act Washingmn DC Author

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Journal of Family Nursing 6 267-286

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White K R Boyce G c Casto G Innocenti M S Taylor M] Goetze L amp 8ehl D (1994) Comparshyative evaluations of early inrervention alrernatives A response to commentaries by Guralnick and Telzrow Early Education and Development 5 56-68

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Handbook of Human

Development for Health

Care Professionals Kathleen Thies PhD RN Associate Professor Graduate School of Nursing University of Massachusetts Medical School Worcester MA

John Travers EdD Professor Lynch School of Education BostOn College Chestnut Hill MA

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