SOCIAL POLICY REPORT
SOCIETY FOR RESEARCH IN CHILD DEVELOPMENT
WASHINGTON UAISON OFFICE' COMMITfEE ON CHILD DEVELOPMENT AND SOCIAL POUCY
Volume III, Number 3
Autumn 1988
IMPLICATIONS OF PUBLIC LAW 99-457 FOR EARLY INTERVENTION SERVICES
FOR INFANTS AND TODDLERS WITH DISABILITIES
Carole C. Upshur
Penny Hauser-Cram
Marty Wyngaarden Krauss
Jack P. Shonkoff
Public Law 99-457 (Education of the Handicapped Act Amendments of 1986) is one of
the most far-reaching pieces of recent federal legislation to affect the lives of
young children with disabilities and their f amilies . This legislation has three main
provisions :
1. Title I establishes a new discretionary program for states to facilitate the
development of comprehensive systems of early intervention services for infants and
toddlers with developmental delays or disabilities .
This program is designated as
Part H of the existing Education of the Handicapped Act.
2.
Title II requires states by 1990 (or 1991, depending on the level of ap propriated funds) to provide free and appropriate public education and related
services for all eligible children with disabilities from the age of 3 to 5 years in
order to receive federal preschool funds .
3. Title III reauthorizes a number of discretionary programs under the Education
of the Handicapped Act, such as services for deaf-blind children, early childhood
research institutes, and grants for personnel training.
This legislation was introduced during the 99th Congress in the
House of
Representatives by Congressman Pat Williams (D-MT) (H . R. 5520); somewhat similar
legislation had been introduced previously by Senator Lowell Weicker, Jr . (R-CT)
(S.2294) in the Senate.
Hearings were conducted during the summer of 1986, and the
final bill was signed into law by President Reagan on October 8, 1986. The Notice of
Proposed Rule Making (NPRM) appeared in the Federal Register on November 18, 1987;
regulations are expected to appear late in 1988.
Even in the absence of final
regulations, states have been developing and refining their policies related to
services for young children with disabilities and their families during the past
year.
SOdaI Policy Report is a quanerly publication of the Washington uaison Office and the Committee on Child Development and
Social PoliCy of the Society for Research in Child Development. Subscriptions for non-members of SReD are available from
the washington uaison Office, 100 Nonh carolina Avenue, SE, SUilc I. washington, D.C. 20003 (202/543-9582) for $10.00.
John C. MasterS, Olajr
COmmlllee on Child Development and SOCial Policy
Jeanene Gcxx1stein, DIrector
waShington uaiSon Office
supponed by Vanderbilt university Institute for Public Policy Studies
I
While acknowledging the importance of all three aspects of P . L. 99-457, this
report focuses on Title I (referred to as Part H)--early intervention services for
infants and toddlers with disabilities.
We discuss the context in which the
legislation was drafted and enacted into law, the status of early intervention
programs at the time of its enactment, and issues related to critical components of
Part H. Four important aspects of the law that lack specificity and thereby permit
(and impose) a great deal of decision-making and flexibility at the state level are
addressed :
definitions of developmental delay, the designation of "risk" groups
eligible for services, the role of families, and the process of transition from
early intervention into preschool.
In light of the complexity of these topics, we
believe they warrant careful consideration by the child development research
community, whose members can both make known the relevant research base and direct
their attention to the investigation of yet unanswered, policy-oriented questions.
The Context for P.L. 99-457
In many' respects, it is surprising that such far-reaching legislation as P.L. 99457 was passed at a time of so little support for expanded federal investment in
education.
The political survival of Part H is even more intriguing, given the
strong objections raised by the Secretary of Education, William Bennett, who found
the program to be "unduly prescriptive, burdensome and costly" (1986, p.2), and the
opposition voiced by the Assistant Secretary for Special Education and Rehabilitation Services, Madeleine Will, who contended that insufficient information on early
intervention existed to make a decision about the role of the Department of Education (U . S. House of Representatives, 1986, p.386). Despite such formidable opposition from within the federal education bureaucracy, proponents of expanded federal
education initiatives countered with the help of powerful advocates within the
Congress, and an extremely energetic array of consumer and professional organizations who mounted an effective lobbying effort from the early committee hearings
through the final days of a possible presidential veto.
Although undoubtedly many factors account for the successful passage of P.L. 99457, including the personal beliefs and values of many of the policymakers who
endorsed its goals, much of its support was derived from the strong foundation of
federal investment in the educational needs of children with disabilities.
The
Handicapped Children's Early Education Assistance Act (P.L. 90-538) was passed in
1968 to authorize funds for the development, evaluation, refinement and dissemination of model demonstration programs for the education of disabled children from
birth through 8 years of age and their parents. Demonstration and outreach projects
continue to receive federal support through the Handicapped Children's Early Education Program (HCEEP) .
The most extensive federal legislation affecting the education of children with
disabilities was P.L. 94-142, the Education of All Handicapped Children Act, enacted
in 1975 (see Behr & Gallagher, 1981 for a review of federal educational policy for
handicapped children).
Despite considerable concern about the extent of its implementation (Singer & Butler, 1987), the fundamental assumption of P.L. 94·142 is
rarely questioned.
That assumption is that all school-age children (between 5 and
17 years) with disabilities have a right to an education appropriate to their needs.
Travers and Light (1982) maintain that social legislation like P.L . 94-142 often
carries with it a "climate of entitlement" that extends beyond the boundaries of the
law itself.
In this case, such a climate promoted the extension of entitlement to
younger children .
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Other forces also have directed attention to the value of intervention during the
early years of life. Public dissemination of the results of evaluation research on
early childhood programs, for example, has promoted widespread awareness of the
benefits of such efforts . This is perhaps best illustrated by the media's response
to the publication of Changed Lives, a report on a 22-year study of economically
disadvantaged children who attended the Perry Preschool Project (Berreuta-Clement,
Schweinhart, Barnett, Epstein, & Weikart, 1984), whose findings of wide - ranging,
long-term benefits were reported through radio broadcasts, evening news programs,
and syndicated columns in major newspapers. Other reports of the long-term value of
early education for young children from economically disadvantaged families have
added further evidence of the benefits of such investments of public resources
(e . g . , Lazar, Darlington, Murray, & Snipper , 1982).
In contrast to the evaluation studies mentioned above, data on the effectiveness
of early intervention programs for infants and toddlers with disabilities are sparse
and less well known . Although such research findings seldom have direct influence
on federal legislation (Andringa, 1976), they may serve to augment lobbying efforts
on behalf of certain programs (Weiss, 1986) .
Thus, references to a body of
knowledge on the efficacy of early intervention services and to the costeffectiveness of special education in general were sprinkled throughout the committee proceedings (U.S . House of Representatives, 1986). Congressman Pat Williams (DMT), for example, began the hearings with the following statement:
I bet no one here today will argue when we say that early intervention is good
social, as well as economic policy. It adds to the quality of human life, and
it is cost-effective for society . (p . l)
Typically, researchers are reluctant to draw such unequivocal conclusions. In a
recent commentary on studies of early intervention services, for example, Palmer,
Capute, and Shapiro (1988) lamented that "it is of concern that the scientific study
of treatment efficacy has lagged behind program development and legislative mandate"
(p . 80) .
Multiple reviews of research on early intervention for infants and
toddlers with disabilities have concluded consistently that few investigations have
met reasonable scientific standards (Shonkoff, Hauser-Cram, Krauss, & Upshur, 1988).
In a systematic analysis of 27 studies of developmentally delayed and/or disabled
infants, Simeonsson, Cooper, and Scheiner (1982) found that statistical procedures
were used to analyze data in only 59% of the reports, despite conclusions of program
success in 92% of studies reviewed.
Dunst and Rheingrover (1981) reviewed 49
studies of programs for infants and toddlers with organic impairments and reported
that 57% of the studies failed to rule out three or more threats to internal validity .
More recent meta-analytic reviews have concentrated on a relatively select body
of higher quality studies.
Casto and Mastropieri (1986) aggregated data from 74
studies of programs for children with biologically based disabilities through age 5
years .
Shonkoff and Hauser-Cram (1987) further restricted this data set to 31
studies of infants and toddlers (below 36 months of age) with disabling conditions
or biological vulnerabilities.
Both meta-analyses found effects of about one-half
of a standard deviation favoring children in early intervention programs over
comparison groups.
Moreover , programs that aimed for high levels of parent participation appeared to be more effective in promoting developmental progress in
disabled infants and toddlers (Shonkoff & Hauser-Cram, 1987).
Reviews of the efficacy of early intervention point to five critical inadequacies
in the existing knowledge base.
First, most studies have focused primarily on the
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effects of early intervention on developmental change in children, with relatively
little empirical investigatIon of its impacts on the adaptive characteristics of
families.
Second, studies have focused largely on changes in children's intelligence quotient (IQ) or developmental quotient (DQ), while neglecting other domains
of competence and behavior that may be more valid ecologically and linked more
closely to specific intervention objectives.
Third , most research has focused on
modal population characteristics (i.e . , "the average child with Down syndrome" and
"the typical parent"), with relatively little empirical examination of differences
among distinct subgroups within these heterogeneous populations.
Fourth, research
has traditionally emphasized the identification of risk factors that predict poor
outcome, with less attention directed to the elucidation of protective factors that
predi ct positive adaptation for both children and their families.
Fifth, most
studies of serv ice effectiveness have been cross-sectional or extended over
rela tively short time intervals . Poor research design, small samples, inappropriate
measures,
and insufficient funding may all have contributed to the above
inadequacies .
As alway s , the development and implementation of services cannot wait for
research findings to settle questions of efficacy .
In fact, a growth in the provision of early intervention services was evident in some states even before the
passage of P . L . 99-457 .
The Status of Early Intervention Programs Before P oL. 99-457
When P . L. 99-457 was passed, the development of policy guidelines and the
availability of services for young children with disabilities varied widely across
the nation (Fraas, 1986; National Center for Clinical Infant Programs, 1985). Half
the states offered no entitlement to services for children under 5 years of age
(Meisels, Harbin, Modigliani, & Olson, 1988), while 14 states provided entitlement
for children with some disabling conditions beginning at birth (Upshur et al.,
1987) .
In a study of selected states, the percentage of the population between
birth and 3 years reported to be receiving early intervention services ranged from
less than . 5% to almost 3%.
Interestingly, the number of children served bore no
relation to either the status of state entitlement or the existence of mandates for
services (Upshur et al ., 1987).
Types of agencies that administered early intervention programs also varied
across states . Health departments were designated most often as the primary service
agency for children under 3 years of age (54.9%) , while · education agencies had
responsibility for children age .3 and over in almost three-quarters (72.6%) of the
states (Meisels et al., 1988).
Poor coordination of services across multiple
programs and funding sources was illustrated by the existence of seven different
demonstration and funding source streams at the federal level (Fraas, 1986) and the
identification of as many as 12 different funding sources at state and local levels
(Meisels et al., 1988) .
Furthermore, using an index of "optimal policies" for
implementing early intervention services, Meisels and colleagues (1988) found that
no state--including those with a universal mandate--met criteria for optimal
policies in all seven defined categories (handicapping conditions served, overseeing
agencies, intervention services, funding sources, interagency contracts, state
regulations or standards, and professional certification).
Such findings, many of
which were presented during the committee hearings (U.S. House of Representatives,
1986), highlight the piecemeal approach to the provision of early intervention
services which existed in most states prior to the passage of P . L. 99-457 and which
the legislation attempts to remedy.
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Critical Aspects of Part H
Early intervention services are defined as
"developmental services which ... are
designed to meet a handicapped infant's or toddler's developmental needs in anyone
or more of the following areas: physical development; cognitive development;
language and speech development; psycho-social development; or self-help skills"
(100 Stat.1146, Sec. 672).
They may include a wide array of services, such as
family training or counseling, special instruction, speech pathology, and psychological services . Health services are included only to the extent they are "necessary
for the infant or toddler to benefit from the other early intervention services"
(Sec . 672).
Interestingly, references are made in Part H to the "development"
rather than the "education" of the infant or toddler with disabilities.
Although the development of a service system beginning at birth is encouraged but
not required by P. L. 99 -457, all states have elected to participate in Part H.
Accurate estimates, however, do not exist of the number of children from birth
through 2 years of age who are eligible for early intervention services nor even of
those currently enrolled in early intervention programs .
In October 1987, a total
of 29,696 children from birth through age 2 were reported to be receiving services
subsidized by P.L. 89-313, which provides grants to state educational agencies for
programs for infants, toddlers, and children with disabilities and to children in
state-supported institutions (U.S. Department of Education, personal communication,
June 13,1988) .
Sixteen states, however, have reported fewer than 10 children
receiving services supported by these funds .
Federal appropriations under Part H initially will be distributed among the
states based on the relative number of children under 3 years of age in each state's
population (i.e., a census allocation), rather than based on the number of children
being served in existing programs . The legislative intent is for federal funds to
be used to establish a service system, and not to pay directly for individual
services, except as a "payor of last resort."
This formula was established to
prevent federal education monies from replacing current sources of federal,
state,
and local funding for early intervention services.
As a federal initiative, P . L. 99-457 allows states a great deal of flexibility in
decision-making regarding organizational structures and programmatic practices. Two
key categories of decisions confront state policymakers over the next four years of
legislative implementation: (1) the organizational structures to be established for
the management of early intervention services, and (2) the specific programmatic
elements of service provision.
This report will focus briefly on the requirements
of organizational structure and will then
examine four aspects of programmatic
decision-making, each of which has a research base in the child and family
development literature.
Structural Decisions
To receive Part H funds, a state must meet certain requirements related to the
development of an organizational infrastructure to support the establishment of an
early ineervention service system. Two of these requirements are the determination
of a lead agency and the appointment of an Interagency Coordinating Council. Both
attempt to prevent the kind of patchwork system of services frequently found in
state systems of early intervention (e.g., Meisels, 1985).
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Prior to the passage of P.l.. 99-457, services for infants and toddlers with
disabilities were delivered through programs supported by the U. S. Department of
Health and Human Services, such as the Developmental Disabilities programs or the
Maternal and Child Health Block Grant, and programs supported by the U.S. Department
of Education, such as demonstration projects funded through HCEEP. Although Part H
is administered by the U.S. Department of Education, each state is given the authority to designate its own lead agency.
About one-third of the states have chosen
departments of education as their lead agency, slightly fewer have selected departments of health, and the remainder have chosen other agencies, such as departments
of mental health or human services (Garwood, Fewell, & Neisworth, 1988).
Each state also must establish an Interagency Coordinating Council to assist in
the planning, development, and implementation of its statewide system. This provision was
deemed necessary because,
in most states,
no single agency has respon-
sibility for all appropriate early intervention services, even when a lead agency
has been designated.
Coordination between health care and education agencies at both the state and
federal levels will be particularly critical to successful implementation of Part H.
Traditional relationships between the health care (public and private) and education
communities around the care of infants and toddlers with disabilities, however, have
been uneven and complex.
Although physicians, particularly pediatricians, are
usually the professionals most likely to identify disabling conditions in very young
children (as well as those who are at risk for developmental problems), attitudes
toward early intervention services within the medical community range from
enthusiastic endorsement to serious skepticism (Green, Ferry, Russman, Shonkoff, &
Taft, 1987). Furthermore, despite the fact that many infants with disabilities have
associated health problems (e.g., seizures, sensory impairments, growth disorders)
that require sophisticated medical management to assure optimal early intervention
efficacy, successful medical-educational collaboration has evolved slowly and
inconsistently across the country.
The jurisdictional boundaries between health care and education in the political
arena served to accentuate these "turf" issues during the process of crafting the
new law.
As is often the case, this was particularly true with regard to concerns
about the allocation of "education" dollars for "medical" services. To counteract
this problem, a federal interagency group has been formed between the Bureau of
Maternal and Child Health and Resources Development, Department of Health and Human
Services, and the Office of Special Education Programs, Department of Education.
Nevertheless, the need to develop local service systems based on functional medicaleducational cooperation in the context of bureaucratic division of medical and
educational resources remains a perplexing policy challenge.
Programmatic Decisions
Definition of Developmental Delay.
Part H requires that each state develop a
definition of developmental delay to be used to determine the eligibility of infants
and toddlers for services.
The new federal law does not specify criteria for
defining delay, and the only guidance provided is that assessments must employ
appropriate diagnostic procedures covering five areas of performance: cognitive,
physical, language and speech, self-help, and psychosocial development.
The task of defining delay in young children is complex.
Available assessment
methods are not highly reliable, and, when deviations are not extreme, it may be
difficult to differentiate normal variations in development from truly worrisome
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signs during the first few years of life.
In fact, research has shown that early
developmental scores are not highly predictive of later cognitive functioning (Bee
et al., 1982)--in part, because early test performance is overly dependent on motor
skills.
Fur ther difficulty in determining criteria for developmental delay is related to
the cultural and environmental relativity of any definition. Some have argued that
selecting a specific, quantitative indicator from a standardized developmental test
is the most useful strategy (Zigler , Balla, & Hodapp , 1984). Others have suggested
that mental retardation or delay can be understood only within the social context in
which an individual is measured (Barnett, 1986) . Thus, delays in some skill areas
may have more importance for some families than for others .
Similarly, cultural
biases in conventional assessment methods may discriminate against infants and
toddle r s whose family environments promote adaptive and e,cologically valid behaviors
i n areas that are not assessed directly' (Ogbu , 1987) .
Each state will have to grapple wit h determining how much delay must be evident
in order to establish a child's eligibility for service, and what methods of assessment will be used . Both of these decisions will influence whether the total number
of eligible infants will be large or restricted . A great deal of research is needed
on assessment methods that tap subtle behaviors and abilities . Also needed are more
prospective longitudinal investigations designed to follow infants with a range of
early characteristics and risks to better understand which key factors will predict
adaptive or poor developmental outcomes . Given the complexity of this challenge, it
is not surprising that as of January 1988, only half of the states had developed a
definition of developmental delay to determine service eligibility (Gallagher,
Harbin, Thomas, Wenger , & Clifford , 1988).
Determination of Risk.
A second major difficulty facing the states is the
determination of service eligibility related to risk factors. The proposed regulations (Federal Register, 1987) define two major target groups : (1) those experiencing developmental delay at the time of referral and assessment; and (2) those who
have a diagnosed condition that has a high probability of resulting in subsequent
delay .
This second category is commonly known as "established risk" and includes
infants born with sensory impairments, errors of metabolism, or Down syndrome or
other chromosomal abnormalities (Tjossem, 1976). Each state also has the option to
include a third group: children "at risk of having substantial developmental delays
if early intervention services are not provided" (100 Stat.1146) . Children in this
optional category are commonly characterized as "biologically at risk" and/or
"env ironmentally at risk" (Tjossem, 1976) . Difficulties in identifying children "at
risk of delay" include the sensitivity and specificity of existing screening
methods, the unconfirmed probability of a specific condition or circumstance leading
to significant delay, and the potential intrusiveness of screening activities in the
lives of families with very young children .
Epidemiologists disagree on the numbers of young children who have developmental,
neurological, behavioral, or physical vulnerabilities ; estimates range from 3% to
26% of the population between birth and 3 years of age (Haggerty, Roughmann, &
Pless, 1975; Walker & Gortmaker, 1983) .
Furthermore, considerable research has
shown that neither a history of spec i fic biological insults nor the presence of
individual socioeconomic indicators alone predicts later development. For example,
while socioeconomic status is closely associated with mild mental retardation, only
2% to 10% of low- income children are mentally retarded (Ramey & MacPhee, 1986).
Thus , attempts to use basic socioeconomic indicators from birth certificates to
identify children with later school problems have resulted in highly inaccurate
predictions (Finkelstein & Ramey, 1980).
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Alternatively, a "transactional» model of risk, which postulates that multiple
factors play a role in determining developmental outcomes (Sameroff & Chandler,
1975; Sameroff, Seifer, Barocas, Zax, & Greenspan, 1987), has been proposed. Factors
that have been shown to be most useful as predictors include maternal mental health
status,
maternal education,
maternal
locus of control,
home environment
I
parent-
child interaction, absence of father, stressful life events, presence of social
support, and expectations for the child (Bee et al., 1982; Bradley, Caldwell, Rock,
Casey, & Nelson, 1987; Crockenberg, 1981; Werner, 1986).
Research on infants who are categorized as "biologically at risk" (e . g., prema ture babies or those who experienced a specific perinatal insult) has yielded
similar findings.
On the one hand, there is a high correlation between low
birthweight and such conditions as cerebral palsy, mental retardation, seizure
disorders, visual problems, motor coordination problems, and learning disabilities
(Hayden & Beck, 1982) . Such infants also demonstrate differences in temperament and
arousal state when compared with babies of normal birthweight (Field, 1983). On the
other hand, it is difficult to predict which individual infants among those who bear
markers of biological risk will have later developmental problems .
For example,
Werner , Bierman , and French (1971) reported that only 15% of children who
demonstrated school problems in a birth cohort followed through 18 years of age came
from the group of children with high perinatal risk indicators. Recent research on
premature and low birthweight infants (Greenberg & Crnic, 1988; Rauh, Achenbach,
Nurcombe, Howell, & Teti, 1988) points to the importance of studying mother-child
interaction to better understand which children will develop optimally. In view of
the well-documented difficulty in determining the impact of "risk" on later child
development, and given the potential cost implications of a larger target
population , it is not surprising that, at present, only 18 states are considering
the possibility of including "risk groups" under P . L. 99-457 programs, while other
states have delayed the decision (lr decided to start pilot programs (Gallagher et
al., 1988; NASDSE, 1988).
Individualized Family Service Plans. Section 677 of P . L. 99-457 requires that an
individualized family service plan (IFSP) be developed by a multidiscip linary team
for each child and family enrolled in an early intervention program . Based on an
assessment of the child's and family's needs, the IFSP must articulate specific
child and family goals, describe the criteria, methods, and timing to be used to
evaluate goal attainment, specify the services needed to meet each goal, and
identify the case manager who is responsible for ensuring the implementation of the
plan.
The child's parents or guardians are required to be members of the
multidisciplinary team that initially formulates and subsequently reviews the IFSP .
At most, only five states report using an IFSP that meets the requirements of the
legislation (Gallagher et al . , 1988). Thus, most states will have to contend with
constructing policies and guidelines for developing such plans.
The IFSP's two
central elements--the articulation of family service needs and the active participation of the parent(s) in the development of the IFSP- -have generated considerable
controversy. Alternative interpretations of its implications suggest that it can be
viewed either as a natural expansion of current practice in early intervention
programs or as a radical new service frontier for children with disabilities and
their families .
Conceptually, the IFSP codifies the family- focused orientation to which many
early intervention programs already subscribe. The IFSP is predicated on the belief
that children are enmeshed within a family unit and that both the family's and
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child's needs must be met in order for their collective development to be enhanced.
This redefinition of the servi ce recipient reflects contemporary theoretical
perspectives about child development (Belsky, 1981), current practices in many early
intervention programs (Bailey et aI., 1986; Healy, Keesee, & Smith, 1985), and
empirically based findings regarding enhanced outcomes for children whose parent(s)
are involved actively in their experiences with early intervention programs
(Bronfenbrenner, 1974; Shonkoff & Hauser-Cram, 1987). The articulation of specific
goals for the family (as well as for the child), as now required in the IFSP, simply
makes the critical role of families explicit.
Further, the IFSP procedural requirements for parental membership on the interdisciplinary team draw heavily from the legacy of parental involvement embedded
within P . L. 94 - 142 .
For the past decade, children receiving public special education services have been required to have an individualized education plan (IEP) that
must be developed in concert with parents and that is subject to parental approval.
While active parental participation in the IEP process has been found to be uneven
in practice, (Goldstein, Strickland, Turnbull, & Curry, 1980), the precedent for
parental involvement in the assessment of children's needs and in the prescription
of specific services has existed since 1975.
Thus, from a conceptual and a
procedural perspective, the IFSP provisions may be viewed as an incremental, natural
extension of core elements within the field of early intervention (e. g . , a family
focus to services) and within the field of special education (e . g., parental
participation in decision-making) .
The mandate of the IFSP, on the other hand, also can be viewed as a catalyst for
radical change in early intervention programs. For programs that focus primarily on
the child and/or that have less experience in providing parental support groups or
mother - child treatment groups (the most common types of family services currently
offered within early intervention programs) , the IFSP may require an expansion of
service options and a reconceptualization of program goals . Areas in which the most
dramatic changes may be anticipated include the selection of evaluation strategies
to identify family needs and the development of new training experiences for
existing and future service providers to conduct, interpret, and use such assessment
protocols (Vincent & Salisbury, 1988).
While there has been considerable recent interest in family assessment strategies
that are appropriate for early intervention service models, few programs have
incorporated systematic methods for assessing family strengths and needs or for
measuring progress toward family goals (Bailey & Simeonsson, 1986 ; Dunst & Trivette,
1988). Given the limited range of potentially useful instruments described in the
literature, most providers of early intervention services typically rely on informal
impressions of family functioning and family needs based on home visits and intake
interviews (Krauss & Jacobs, i n press).
The collection of data derived from standardized instruments that are culturally sensitive and reliable presents a
formidable challenge to implementation.
While the law requires an articulation of family needs and their incorporation
into the total service plan, it is silent on the specific domains of family life to
be assessed . Thus, it sanctions both cursory and probing evaluations of families .
This need to probe and evaluate family strengths and needs may conflict both with
the training of service providers and with the preferred collaborative nature of the
relationship that develops between program staff and family members (Dunst & Trivette, 1988) . Some families, for example, may chafe at the realization that simply
because their child has Down syndrome, or was born with a low birthweight, they,
too, must be evaluated in order for their child to receive services.
Similarly,
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professionals untrained in family counseling and inexperienced in family assessment
techniques may be uneasy about the need to make actionable judgments about family
needs.
The transformation of an individualized education plan (IEP) for the child into
an individualized family service plan (IFSP) that identifies the needs of all family
members constitutes a major programmatic change in the field of early intervention .
Consistent with knowledge accumulated from both research studies and clinical
practice that points to the most effective treatment strategies, P. L. 99-457 was
crafted to ensure that early intervention as a system reflects a family-focused
orientation.
The latitude given to individual states (and even specific programs)
regarding the form of that intervention is also consistent with the fluid state-ofthe art of family assessment.
The need for experimentation, cross-disciplinary
communication , and collaboration among programs in the development of appropriate
and informative family assessment approaches is obvious .
The opportunities for
clinical and academic researchers to inform and be informed by programmatic experiences are equally compelling .
Transition from Early Intervention to Preschool.
The transition across service
systems at age 3 years represents another emerging challenge in the implementation
of P. L. 99 -457 .
The proposed regulations state that the IFSP must include a
description of the steps to be taken to support the transition of the service
responsibility from the early intervention system to a preschool program (Federal
Register, 1987, Sec. 303.68) and that a case manager must be responsible for facilitating the development of such a plan (Sec. 303.6) .
Although the importance of
planning for such a transition is acknowledged in the proposed regulations,
information about how such planning should be accomplished is meager .
In those states that "have not chosen their department of education to coordinate
the early intervention system , families negotiating a change in the primary service
agency when the child turns 3 years of age will encounter a number of challenges
(Garwood et al., 1988; Harbin, 1988).
Disputes over the determination of
appropriate educational plans, delays in starting services, and disagreements about
whether a child even qualifies for special education programs have all been reported
under the current system of service delivery (Association for Retarded Citizens,
1986) .
Procedures will have to be established to help children and families enter
new systems, and the new systems will have to be prepared to provide appropriate
services.
Information sharing among agencies with conflicting mandates related to record
keeping and confidentiality has been shown to be a major problem (NASDSE, 1988), one
that is likely to be magnified during transitions from one service system to
another. Diverse provisions of the new law with regard to children under age 3 years
(Title I) and those over age 3 years (Title II) may further complicate the
transition process. Differences in the definitions of children to be served and in
the range of allowable services, particularly for families, are especially problematic .
Although little research has been done on the specific effects of program transitions on children and families, research on family functioning has demonstrated
increased stresses related to particular events in the course of family life (Turnbull, Summers, & Brotherson, 1986) .
Wikler, Waslow, and Hatfield (1981) contend
that transition points highlight uncertainties about the future and are times of
particular stress for families. Such transition points act as reminders to parents
that their children are not developing in the same way as their nondisabled peers .
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1
Other studies have noted that the transition from family-oriented, home-based
services (typical of early intervention) to child-oriented, classroom-based services
(typical of preschool services) requires a major adjustment for parents of children
with disabilities (Bernheimer, Young, & Winton, 1983).
Studies of child and family transitions around school entry have focused almost
exclusively on the transition from preschool to kindergarten, or from kindergarten
to first grade (Ladd & Price, 1987). One investigation of nondisab1ed toddlers and
preschooler" found stress reactions associated with a change in day care or nursery
school classrooms (Field, Vega-Lahr, & Jagadish, 1984).
Studies on children with
disabilities have tended to concentrate on "best practices" and emphasize the type
of planning, coordination, and family involvement that should take place (Diamond,
Spiegel-McGill, & Hanrahan, 1988; Johnson, Chandler, Kerns, & Fowler, 1986). As we
move toward implementation of more extensive early childhood and preschool services,
careful planning for transitions and further systematic evaluation of the process
itself will be needed.
Conclusions
The passage of P.L. 99-457 was propelled by a confluence of public policy goals :
to equalize access to preschool special education programs for 3- to 5-year-01ds
with developmental disabilities and/or delays; to arrest the uneven development
nationally of early intervention services through the establishment of a coherent
and consistent system of programs; and, to extend the rights of families of young
children with developmental disabilities and/or delays through the prescribed
requirements and protections of an IFSP.
For most states, P. L. 99-457 requires a
fundamental change in special education services (by extending the age of eligibility) and promotes the development of an entirely new service structure for children
under the age of 3 years with disabilities and their families. While the logic and
structure of the extension of special education services for children from 3 to 5
years of age is drawn heavily from P. L. 94-142, provisions for early intervention
systems and program standards break new federal ground.
From a policy implementation perspective, P.L. 99-457 represents a bold initiative and raises formidable issues. Each state must make independent decisions about
the definition of developmental disability, the service eligibility of children atrisk for developmental delays, the criteria and methods to be used for family
assessment, and the strategies needed to facilitate a smooth transition of children
and families from early intervention programs to preschool special education services. How these decisions are reached--whose views are solicited by state po1icymakers, how research is used to inform and defend specific decisions, and how the
impacts of existing state practices are assessed--wi11 require the participation of
diverse constituencies from the academic, policy, and service delivery arenas.
Research findings alone rarely determine the outcomes of such policy debates.
Moreover, research studies seldom converge on a simple set of findings related to
issues as complex as those raised by P.L. 99-457. The research community, however,
can wield considerable influence by ensuring that the standards and methods for
defining key concepts (e.g., developmental delay, at-risk, family needs) reflect the
best available knowledge and that the results of all policy decisions are evaluated
for both their intended and unintended consequences.
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I
Acknowledgements
The authors express gratitude and appreciation to the following individuals who
assisted in the review of this report:
Patrick H. Casey, M. D., S . Gray Garwood,
Ph.D . , Kathleen Hebbeler, Ph.D., Vince Hutchins, M.D., Samuel J . Meisels, Ed . D.,
Charles Oberg, M.D., Judi Thiele, Ph.D., Maris Vinovskis, Ph.D, and Jeanette
Goodstein, Ph.D.
Additional thanks are due to Gladys Rivera, who assisted in
preparing the manuscript.
Sources of Further Information
Agencies and Professional Organiz"a tions
The Council for Exceptional Children (CEC), Division for Early Childhood (DEC), 1920
Association Drive, Reston, VA 22091. Contact : Carl J. Dunst, Ph.D., DEC President,
300 Enola Road, West Carolina Center, Morgantown, NC 28655 (704-433-2661); or
Crystal Kaiser, Ph . D. , DEC President-Elect, East Tennessee State University, Center
for Early Childhood, Box 15, 520A, Johnson City, TN 37614-0002 (615-929-5615).
National Association of State Directors of Special Education, Inc . (NASDSE), 2021 K
St ., NW, Suite 315, Washington, DC 20006 (202-296-1800) .
Contact: Sharon Walsh,
M. A., or Patti Place, Ph.D.
National Center for Clinical Infant Programs (NCCIP), 733 Fifteenth St., NW, Suite
912, Washington, DC 20005 (202 - 347 -0308) . Contact : Eleanor Stokes Szanton, Ph. D. ,
or Carol P . Berman, M.A .
National Early Childhood Technical Assistance System (NEC*TAS), CB # 8040, 500 NCNB
Plaza, University of North Carolina, Chapel Hill, NC
27599 (919-962-2001, 9627314). Contact: Dianne Rothenberg, M.S., Assoc. Director for the Clearinghouse .
U.S. Department of Education, Office for Special Education and Rehabilitation
Services, 400 Maryland Ave., SW, Washington, DC 20202 (202-732-1084).
Contact:
Susan Fowler, Ph.D . , or Maryann McDermott, M.A . (202-732-1097). For information on
the IFSP Task Force Report, contact: Carole Brown, Ed.D . , Office of Special
Education Programs, MAS 2313-3094, 330 C Street, SW, Washington , DC 20202 (202-7321093) .
U. S . Department of Health and Human Seryices, Bureau of Maternal and Child Health
and Resources Development, Parklawn Building (Room 640), 5600 Fishers Lane, Rockville, MD 20857. Contact Merle McPherson, M. D. (301-443-2340).
Documents
The Carolina Policy Studies Program (CPSP), University of North Carolina at Chapel
Hill, Frank Porter Graham Child Development Center, Suite 300 NCNB Plaza, #322A UNC
Campus, Chapel Hill, NC 27599-8040. For information on a series of descriptive and
explanatory studies on the policy development and implementation of P. L. 99-457,
contact James Gallagher, Ph.D., Director (919-962-7374).
U. S . Department of Education, Tenth Annual Report to Congress on the Implementation
of the Handicapped Act (1988) .
U. S. House of Representatives, House Report 99 -860, Report to accompany H. R. 5520
(1986) .
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]
All authors are affiliated with the Early Intervention Collaborative Study,
supported by Grant MCJ -250533 from the Bureau of Maternal and Child Health and
Resources Development, U.S. Department of Health and Human Services, and the Jessie
B. Cox Charitable Trust, Boston, Massachusetts. Dr. Marty Wyngaarden Krauss is also
affiliated with The Heller Graduate School, Brandeis University.
The opinions
expressed are solely those of the authors.
AAAAAA
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