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New precedent in family policy: individualized Family Service Plan.

New Precedent in Family Policy: Individualized Family Service Plan

The 1986 Amendment to the Education for All Handicapped Children Act, Public Law 99-457, in both spirit and word, fundamentally alter public policies for children with handicaps or developmental delays--and for their families. In addition to extending federal requirements for special educational services to children between the ages of 3 to 5 years by 1990, Part H of the law established a discretionary program to assist states in the development and implementation of a system of early intervention services for handicapped infants and toddlers and their families. Embedded within the provisions of Part H is the requirement that early intervention programs develop an Individualized Family Service Plan (IFSP) for each enrolled child and his or her family. The IFSP effectively redefines the service recipient as being the family (rather than the child alone), requires explicit judgments about the family's service needs, and reconstitutes the decision-making team by mandating family representation. These three critical features, in both symbolic and practical terms, marka precedent in public policies for handicapped children and their families.

This article presents two perspectives on the IFSP as a barometer of change in family policy. It begins with a brief discussion of the traditional ambivalence of policy makers to mandate services for families solely because they have a child with a handicapping condition. It then presents a review of the legislative requirements for the development and content of the IFSP. Finally, two contrasting perspectives on the IFSP are presented: as either a radical change in family policy or as an example of legislative incrementalism. The implications of both perspectives for service providers and families are discussed.

POLICIES TOWARD FAMILIES WITH A

HANDICAPPED CHILD

Although public policies toward families with a handicapped child acknowledge families' legitimate claim on public resources, they historically have not expected or permitted families to exercise this claim equally (Krauss, 1986). The assumption of special family needs is based on decades of research enumerating the social, emotional, and financial consequences of parenting a child with a handicap (Blacher, 1984; McConachie, 1986). Affected families have given vivid accounts of their often extraordinary efforts to secure services for their child while also attending to the general welfare of the family unit (Featherstone, 1980). This body of work has been credited with the positive impact of justifying the use of public resources to assist families in the care and development of their handicapped children (Farber, 1986). This work, however, also has been criticized for its reliance on a pathological or deficit model of family functioning and adaptation (Crnic, Friedrich, & Greenberg, 1983).

Moroney (1976) noted that public policies for families with handicapped children typically are based on a model of crisis intervention in which services are provided only to those who have exhausted private avenues for meeting acute or chronic difficulties. The reluctance of governmental policy makers to support preventive family programs reflects an historical and cultural ambivalence to intrude on the privacy and sanctity of individual families (Steiner, 1981). As a result, services are rationed according to criteria designed to ensure that only the most "in need" are covered (Krauss, 1986; Mallroy, 1981).

Service-use studies have confirmed repeatedly that families differ in their need and use of publicly supported services (Krauss & Giele, 1987; Moroney, 1980; Suelzle & Keenan, 1981). Families also differ in their preferences for the amount and nature of their involvement in service delivery systems (Turnbull & Turnbull, 1982). Further, the expanding literature on the positive impacts of rearing a child with disabilities has tempered the more common view that such families experience predominantly negative impacts on family life (Goldfarb, Brotherson, Summers, & Turnbull, 1986; Powell & Ogle, 1985).

The mandates of P.L. 99-457 explicitly assume that families with handicapped children have a universal claim on public resources and that their differential service needs should be addressed in conjunction with their child's services. Through the IFSP, families are entitled to services and are empowered to participate in the decision-making process regarding what types of services should be provided. To a large extent, these family policies parallel those adopted in the parental participation provisions of P.L. 94-142, which gave parents the right to review and approve individualized special education plans and to receive "related" services necessary for the educational develoment of their children (Mallory, 1981). P.L. 99-457, however, differs from related, earlier legislation in its formal acknowledgement that services to family members can and should be provided independent of the treatment or educational needs of their children with handicaps. This constitutes a significant departure from existing policies.

THE IFSP: A DESCRIPTION

Most service systems for persons with disabilities require a written plan that details the individual's needs and required services. Individualization of services has become a hallmark of the special education system (as operationalized by the Individualized Education Plan, IEP) and of the adult services system (as operationalized in Individualized Service Plans or Individualized Habilitation Plans). In this regard, the IFSP is yet another iteration of a basic belief in he right to persons with disabilities to receive services that are tailored to their specific needs.

The law is explicit on aspects of the IFSP's content and process for development. The IFSP must contain a statement of the child's present functioning in the following areas: physical development, cognitive development, language and speech development, psychosocial development, and self-help skills. It must also contain a statement of the "family's strengths and needs related to enhancing the development of the family's handicapped infant or toddler." Specific goals or outcomes for the family and the child must be written, along with the criteria, methods, and timing to be used to evaluate goal attainment. The services needed to achieve prescribed goals (including their frequency, intensity, and method of delivery) must be fully described, and the family's case manager, responsible for implementing the plan, must be named. The multidisciplinary team that formulates the ISFP is required to review and revise the plan on a scheduled, periodic basis.

The process for the development of the IFSP requires that the child's parent(s) be a member of the multidisciplinary team that constructs the plan. The team's decisions must be based on a multidisciplinary assessment of the child and family. Procedural safeguards are specified that may be invoked by parents who dispute the program's compliance with the law's requirements.

The IFSP provisions of Part H have generated considerable controversy among system planners and program providers who are charged with developing the procedures by which the IFSP (which focuses on the family as a unit) will supplant the traditional individualized service plan (which focuses on the child as the primary service recipient) in early intervention programs (Hauser-Cram, Upshur, Krauss, & Shonkoff, 1988; McGonigel & Garland, 1988). Depending on one's interpretative lens, the IFSP provisions may be considered a radical or fundamental change in social policy toward families with a handicapped child. Alternatively, they may be viewed as an example of legislative incrementialism, or the making of relatively small adjustments in existing programs and policies to gradually achieve long-term goals (Lindbloom, 1959).

Resistance to full implementation of the spirit and letter of the law can be anticipated if the IFSP is viewed by service providers as a radical change in service and policy principles. The IFSP essentially redraws professional-parental boundaries (through parental participation on the multidisciplinary team) and recasts the framework of services (from the child as the primary recipient to the family as a unit). These fundamental changes challenge existing practices in many early intervention programs, as described in the following section.

If viewew as an incremental change in existing services and policies, implementation issues will more likely focus on the development of best practices or techniques for achieving full compliance. Incremental change is typically viewed as less threatening to prevailing practices and, indeed, is often championed as necessary adaptations in service-delivery patterns to remedy known deficiencies.

The Radical Perspective

What's so radical about an IFSP? First, the IFSP provision represents a federal requirement that a mandated service for particular children delve into the lives of the child's family. Specific objectives for the family, as well as for the child, are to be articulated and progress toward those objectives measured. This approach represents a significant departure from the traditional hands-off approach of public policies to interverning in the lives of families who are not otherwise identified as having problems (Steiner, 1981). It assumes that all families with a handicapped child are in need of services to enhance their child's development. This assumption may be interpreted as consistent with the pathological model of family adaptation that characterizes a good deal of the research literature.

Second, the IFSP represents a significant change in current service delivery practices. The law describes the family as the primary service recipient--not the child in isolation from the family unit. Few early intervention programs currently include an explicit assessment of family strengths and needs in the development of the child's plan for services (Bailey & Simeonsson, 1986; Dunst & Trivette, 1988). Though informal family evaluations may be made based on clinical impressions and intake interviews, there is a deep-seated discomfort on the part of many early intervention professionals, who have been trained in their specific therapeutic disciplines, to make actionable judgments about the functional needs of such complex and private domains as families (Kruass & Jacobs, 1990).

Although the law requires the documentation of family needs and their incorporation into the IFSP, it is silent on the specific domains of family life that should be assessed. Thus, it santions both cursory and probing evaluations of family functioning. The word needs is indeed vague, but there are currently no parameters defined for how deeply or broadly family functioning or resources (either personal or familial) can or should be investigated to develop a responsive service plan. Some early intervention programs may take an aggressive position with respect to the range of parental psychodynamic characteristics, intrafamilial processes, and family resources considered appropriate for review. Others may adopt less intrusive assessment protocols.

Issues of parental and family privacy are sure to surface quickly. Families may chafe at the realization that because their child has Down syndrome, or was born with a low birthweight, they, too, must be evaluated if their child is to receive services. Disagreements between professionals and families regarding family needs and goals will reveal the fundamental ambiguity in the law regarding whose judgment should prevail. This may provoke defensiveness and resentment from families and establish an adversarial relationship with a program that the family expects simply to provide therapeutic services for their child. The need to probe and to evaluate may also conflict with the collaborative (rather than clinical) relationship with families preferred by many early intervention program staff (Zeitlin, Williamson, & Rosenblatt, 1987) and families themselves (Moeller, 1986). It may place parents in an awkward position of judging their own capacities and vulnerabilities in full view of professionals with whom they have no preexisting relationship.

The responsibility to articulate family strengths and needs to create an IFSP would be less challenging to early intervention program personnel (and families) if there were well-developed assessment tools with which to implement this provision. Limitations in existing family assessment protocols have been discussed repeatedly in the literature and confirmed in clinical settings (Bailey & Simeonsson, 1986; Fewell, 1986; Krauss & Jacobs, 1990). Despite the fact that family strengths and needs are to be defined in concert with the family, the requirement to monitor and evaluate progress toward meeting goals will undoubtedly push programs into developing some standardized methods for family assessment. Methods that are technically astute may also promote professional-parent disagreement regarding the method's relevance or sensitivity to parent concerns.

The implications of these mandates for professional training and service delivery issues are far reaching. The need for interdisciplinary training programs for early childhood professionals that incorporate child and family development curricula has been widely acknowledged (Bailey, Farel, O'Donnell, Simeonsson, & Miller, 1986; Shonkoff & Meisels, 1990). Those who develop early intervention programs will also have to become knowledgeable about the range of family services available in their communities and develop referral mechanisms to ensure that relevant and needed services are provided to families. The mandate to integrate child and family services within early intervention programs may also result in an expanded conceptualization of the types of family-oriented services that should be available within early intervention programs.

Thus, from a radical perspective, the IFSP mandate challenges historially sanctioned policies of reserving family-oriented services to agencies that are distinct from those serving children with handicaps. It will require a fundamental change in the training of childhood professionals and place new responsibilities on existing personnel. The implementation of the IFSP mandate may well require structural and programmatic changes in the design of early intervention services. To meet the diverse needs of families, for example, early intervention programs may need to strengthen their links to other community agencies. Ultimately, this will stimulate the development of referral networks among a disparate collection of related service agencies.

The Incremental Perspective

From an incrementalist perspective, the explicit incorporation of family needs into the formal individualized service plan drawn up by early intervention programs simply codifies the family-focused orientation to which many early intervention programs, child developmentalists, and program evaluators already subscribe and practice. Redefining the service recipient reflects contemporary theoretical perspectives about child development (Belsky, 1981), current practices in many early intervention programs (Bailey, et al., 1986; Bricker & Casuso, 1979, Healy, Keesee, & Smith, 1985), and empirically based findings regarding enhanced outcomes for children whose parent(s) are involved actively in their early intervention programs (Bronfenbrenner, 1974; Shonkoff & Hauser-Cram, 1987). Thus, to include the parent(s) as a member of the service decision-making team, to specify parental needs and concerns in the IFSP, and to establish a verbalized partnership with families in the promotion of the child's and family's development is wholly consistent with current best practice principles.

The IFSP provisions state that family needs are to be determined in relation to the enhancement of the child's development. This can be interpreted as an acknowledgement that the family exerts the pivotal influence on the child's development and that services directed to the child must work with and through the family to be effective. This approach has been espoused on both theoretical (Bronfenbrenner, 1986) and empirical grounds (Crockenberg, 1981; Weinraub & Wolf, 1983). The role of families, therefore, in early intervention programs may be viewed as a collaborator with the professional staff, with both parties focused on facilitating the child's development. Family needs may be defined only insofar as they relate to the concrete objective of ensuring that the child with a handicap receives the full support and expertise of those members of the child's ecological system--i.e., family and formal service providers. This perspective assumes that though the target of the IFSP remains the child, there is, simultaneously, an acknowledgement of the central role that the child's family occupies in achieving any prescribed therapeutic goals.

The IFSP provisions can also be interpreted as more incremental than radical from another perspective. As noted earlier, the procedural requirements for parental membership on the early intervention multidisciplinary team draw heavily from the legacy of parent involvement incorporated within P.L. 94-142. When children enter the public special education system, parental input and agreement to the child's educational plan is a federal requirement. In practice, active parent participation in the IEP process has been found to be uneven (Goldstein, Strickland, Turnbull, & Curry, 1980; Trailer, 1982), but the precedent for parental involvement in the assessment of children's needs and in the planning of specific services has existed since 1975. To extend this familial obligation or role to federally supported early intervention programs is a logical step. Indeed, to deny formal parental participation in the services designed for their very young child and themselves would challenge deeply held values about the primacy of the family's role in the care and nurturing of their children.

Further, no regulation states that an IFSP is incomplete without family-oriented goals. If, on the basis of the interdisciplinary team assessment, specific and measurable family goals are deemed unnecessary (particularly according to the family's wishes), the IFSP can contain such a statement and include only the service goals determined for the child receiving services. Thus, the presumption that not all families will require services is maintained. The law and its regulations only legitimatize the possibility that families will be service recipients, rather than require any specific services for families for whom no observable or measurable needs are present.

POLICY AND PROGRAM

IMPLEMENTATION ISSUES

Public policies for families with handicapped children have long been criticized for being unresponsive to family needs and unsupportive of familial care (Moroney, 1983). Though state-level initiatives in the development of family support programs have increased dramatically in the last decade, typically these programs are not comprehensive, are targeted to a limited number and type of family, and rely on unstable funding sources (Agosta & Bradley, 1985; Krauss, 1986). Part H of P.L. 99-457 is the first piece of federal legislation that implicitly acknowledges the transactional nature of child development (Sameroff & Chandler, 1975), requiring that the family and the child be viewed as one unit and that their unique and collective needs be assessed and met. In breaking with the historical tradition of separating services for children with handicaps from those available for their families, Part H sets a precedent for future policies by establishing the family unit, rather than individual members within it, as the appropriate focus of service.

Conceptually, the IFSP mandates of P.L. 99-457 are consistent with contemporary perspectives on the ecology of child and family development and with current special education practices requiring parental involvement in decision making. Procedurally, the IFSP mandates require fundamental structural change in what is anticipated to be a national network of services for young children with disabilities and their families. For example, recent studies found that only 20% to 40% of parents were programmatically involved in their child's early intervention program (Bricker, 1986) and that before the law's passage, only 19% of the states required the designation of a case manager in early intervention programs (Meisels, Harbin, Modigliani, & Olson, 1988).

Although a new precedent has been established with the passage of P.L. 99-457, studies of policy implementation suggest that the powerful forces behind the implementation of any law are the front-line people--the legions of professionals who interact with the public and dispense their version of the law (Lipsky, 1980). The front-line implements of these policies are the local early intervention professionals. Their view of the IFSP as radical or incremental will depend on their professional training, their programmatic experience, and the speed with which valid and reliable family assessment and planning instruments are developed.

For program staff who are not convinced that parents are ready to articulate appropriate goals for their children upon entering an early intervention program, the law certainly will be more radical than incremental. For programs serving families who have limited experience with publicly supported programs and who are not used to being asked personal questions about their family's needs to receive services, the law may well feel intrusive and radically different from their sensibilities about appropriateness. One can easily imagine the ingenious ways in which the law will be circumvented in such situations. As a public policy, the law may have underestimated the tremendous variability in the populations served by early intervention programs and misjudged the breadth of enthusiasm that was implied by the testimonies heard before the law was passed.

In contrast, for programs that have long heralded the family as the core to programmatic success or who serve families who are accustomed to answering probing personal questions before receiving publicly supported services, the law will seem an incremental expansion of current practice and likely be welcomed and supported. As McGonigel and Garland (1988) noted, there is an evolutionary quality to the goals for family involvement in early intervention and educational programs. Parent involvement used to mean rather passive review and approval (at least in special education programs) of professionally derived plans. It then grew to include parents as co-therapists or intervenors with their children, carrying out professionally directed interventions. It has now evolved into concepts about parent empowerment or the support of parent-derived goals and intervention strategies. In this context, the IFSP provisions are wholly consistent with the incremental changes that have been witnessed in the forms of parent involvement within such specialized service programs. For many programs or state systems, the law may invigorate and stimulate programmatic activities in these desired directions.

Thus, a new precedent in public policy for families with a handicapped child has been created in this law. The full implementation of this precedent--the integration of child and family services--requires adequate resources committed by the Congress and states; appropriate, though complex, administrative structures at the state level; and a responsive system of early intervention programs at the local level (Shonkoff & Meisels, 1990). In subtle and overt ways, however, the local early intervention program will negotiate the law as passed by the Congress within the realities of its organizational capacities and philosophical orientation. Whether professionals within these programs champion the intent of the IFSP or comply minimally with its mandate warrants careful scrutiny.

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Turnbull, A. P., & Turnbull, H. R. (1982). Parent involvement in the education of handicapped children: A critique. Mental Retardation, 20, 115-122.

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Zeitlin, S., Williamson, G. G., & Rosenblatt, W. P. (1987). The coping with stress model: A counseling approach for families with a handicapped child. Journal of Counseling and Development, 65, 44-65.

MARTY WYNGAARDEN KRAUSS is Assistant Professor and Director, Staff Center for Mental Retardation, The Heller School, Brandets University, Waltham, Massachusetts.
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