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Family-oriented early intervention policies and practices: family-centered or not?

The term family centered has been increasingly used to describe diverse types of social interventions both in early intervention (e.g., Able-Boone, Sandall, Loughry, & Frederick, 1990; Hanft, 1989) and nonearly intervention fields (National Head Start Association, 1990; Shelton, Jeppson, & Johnson, 1987). The use of the term is unfortunately clouded by several considerations: two programs might say they are family centered but be quite different in their assumptions, goals, and operational features and characteristics; or two programs might be quite similar but use different terms (e.g., family-centered vs. family-focused) to describe their approaches to working with families.

The purpose of this article is to (a) bring clarity to the meaning of family centeredness and (b) assess the degree to which family-oriented early intervention program policies and practices are family centered. The term family centered refers to a combination of beliefs and practices that define particular ways of working with families that are consumer driven and competency enhancing. Early intervention is used broadly to mean intervention practices with children birth to 6 years of age, although most of what has been written about family-oriented early intervention specifically addresses service delivery for children birth to 3 years of age. This is primarily the result of the Public Law 99-457, Part H Early Intervention Program, enacted in 1986 (see e.g., Brown, 1990; Burnim, 1990; Gallagher, Trohanis, & Clifford, 1989; Hanft, 1989; Meisels & Shonkoff, 1990).

FAMILY-ORIENTED SUPPORT AND

RESOURCE MOVEMENTS A good starting point for making sense of family-oriented policies and practices is understanding several broader based family support and resource movements. Family support and resource programs are efforts directed at reforming existing policies and practices in ways that enable and empower people by enhancing and promoting individual and family capabilities that support and strengthen family functioning (Dunst, Trivette, & Thompson, 1990; Kagan & Shelley, 1987; Weissbourd & Kagan, 1989; Zigler & Berman, 1983; Zigler & Black, 1989). There are now five family resource movements that collectively aim to support and strengthen families, albeit from different perspectives, using different approaches.

The most influential movement can be traced to the self-help and grassroots efforts that emerged in the late 1960s and early 1970s (Weissbourd, 1987). This approach is best reflected by the efforts of the Family Resource Coalition, an organization of more than 2,000 family support programs dedicated to the development of community-based programs for supporting and strengthening family functioning (Weissbourd & Kagan, 1989; Zigler & Black, 1989). A second movement is represented by the efforts of state governments to establish policies and programs that aim to support and strengthen all families of young children (Weiss, 1989). These efforts break with public service tradition in which human services are rendered only to those judged "most needy" or "at greatest" risk for poor out-comes. A third movement is represented by the family-oriented and community-based efforts espoused by the U.S. Department of Health and Human Services, Division of Maternal and Child Health (Brewer, McPherson, Magrab, & Hutchins, 1989; Shelton et al., 1987). This movement aims to mobilize the necessary supports and resources for families of health-impaired and medically fragile children and adolescents. A fourth movement is now represented by 42 states that have family support initiatives for persons with developmental disabilities and their families (Knoll et al., 1990). This movement places primary emphasis on the "important role the family and members of the community can play in enhancing the lives of persons with disabilities, especially when necessary support services are provided" (U.S. Senate Report 100-113, 1987, pp. 1-2).

The fifth family support movement, and the one that is the focus of this article, is represented by contemporary early intervention practices with very young children with disabilities. These particular practices are clearly family oriented (Dunst, 1985; Simeonsson & Bailey, 1990) as opposed to primarily parent-child or child oriented (see Meisels & Shonkoff, 1990). The heritage of contemporary family-oriented early intervention programs can be traced to the infant and pre-school initiatives of the 1960s and 1970s. With very few exceptions (see Zigler & Berman, 1983), however, the family oriented early intervention programs that emerged in the mid- and late 1980s are quite distinct and different from their predecessors in both assumptions and practices (Zigler & Black, 1989).

Although each of the family support and resource program movements have certain common underpinnings, they nonetheless differ in important ways. Close inspection of the "belief-practice relationship" both between and within movements shows considerable variation in underlying assumptions, presumed or explicit models, and the practices used to achieve the aims of the programs.

PRINCIPLES, PARADIGMS, AND

PRACTICES The manner in which early intervention policies and practices are family centered was assessed using a triangulated program parameters framework (Denzin, 1978; Karnes & Johnson, 1988) that specifies three converging dimensions of family-oriented programs: principles, paradigms, and practices. This has evolved from our attempts to understand the degree to which early intervention policies and practices are family-centered. According to this perspective, principles influence and define program paradigms, and both principles and paradigms influence program practices. Inasmuch as the adoption of different principles uniquely define different models, which in turn define different sets of interventions, both policies and practices may be judged against the different program parameters to ascertain degree of family centeredness.

Family Support Principles Family support principles are statements of beliefs about how supports and resources ought to be provided in a family-centered manner. Taken together, a particular set or combination of principles represents a philosophy about family centeredness (Weissbourd, 1987).

An aggregation of existing family support principles shows that they can be organized into six major sets of principles (Dunst, 1990): (a) enhancing a sense of community, (b) mobilizing resources and supports, (c) shared responsibility and collaboration, (d) protecting family integrity, (e) strengthening family functioning, and (f) proactive human service practices. Table 1 lists the major characteristics and provides examples of the principles that are included in each set.

Social intervention efforts that subscribe to all or most of the types of principles listed in Table 1 can be said to be a family-centered program. These principles provide one set of standards for assessing whether policies or practices, or any other aspect of a program (e.g., staff roles and responsibilities), show a presumption toward "family centeredness" in ways that are likely to support and strengthen family functioning. Both the 12 principles listed in Table 1 and an expanded set of 30 principles (see Dunst, 1990) were used in our study to ascertain the degree of family-centeredness of early intervention policies and practices.

Paradigms

Paradigms are models that provide a way of understanding particular phenomena (e.g., family-oriented programs), a segment of the universe of the phenomena (e.g., family-centered programs), and the relationship between elements (e.g., family support principles) that uniquely define particular segments. A synthesis of classification schemes (Brown, Pearl, & Carrasco, 1991; Deal & Pletcher, 1991; Dunst, 1988; Simeonsson & Bailey, 1990) indicates that there are four broad classes of family-oriented early intervention programs: professional-centered, family-allied, family-focused, and family-centered. All four models consider the family as the unit of intervention and employ social systems frameworks for understanding how the family influences and is influenced by events within different ecological systems (Barber, Turnbull, Behr, & Kerns, 1988; Dunst, 1985; Dunst & Trivette, 1988; Weiss & Jacobs, 1988):

* Professional-centered models: Professionals are seen as experts who determine the needs a family has from their own as opposed to a family's perspective. Families are seen mostly as deficit or pathological who require the help of professionals to function in a more healthy manner. Interventions are implemented by professionals because families are seen as incapable of "solving their own problems."

* Family-allied models: Families are seen as the agents of professionals. Families are enlisted to implement interventions that professionals deem necessary for the benefit of the family. Families are seen as minimally capable of independently effecting changes in their lives, and can do so only under the tutelage of professionals.

* Family-focused models: Families and professionals collaboratively define what families need to function in a more healthy manner. Families are seen in a more positive light, but are generally viewed as needing professionals for advice and guidance. Families, in order to function as well as possible, are encouraged to use primarily professional networks of services to meet their needs.

* Family-centered models: Practices are consumer-driven; that is, families' needs and desires determine all aspects of service delivery and resource provision. Professionals are seen as the agents and instruments of families, and intervene in ways that maximally promote family decision making, capabilities, and competencies. Intervention practices are almost entirely strength- and competency-based, and the provision of resources and supports aim primarily to strengthen a family's capacity to build both informal and formal networks of resources to meet needs.

Intervention Practices Practices are ways of acting or behaving. Intervention practices that adhere to certain beliefs or ideals (e.g., family support principles) or derive from specified paradigms (e.g., family-centered), or both, define circumscribed ways of performing "expected" behavior. To the extent that certain beliefs and models uniquely define expected behavior, the practices may be said to behaviorally define a particular family-oriented approach to early intervention. Table 2 gives examples of behavioral indicators associated within each of the four family-oriented paradigms for various aspects of early intervention practices.

Collectively, the three parameters (principles, paradigms, practices) of social intervention programs provide a macroframework for examining family-oriented early intervention policies and practices from several different vantage points. To the extent that all three perspectives yield converging evidence regarding particular family-oriented policies and practices, a strong case can be made about the current status of early intervention programs at different levels of conceptualization and implementation.

METHOD A multimethod, multisource approach was used to analyze and synthesize what we know about the policies and practices of family-oriented early intervention programs. We first analyzed seven pieces of federal legislation: P. L. 94-142 (Education of All Handicapped Children Act); P. L. 99-199 (Education of the Handicapped Act Amendments); P. L. 99-457 (Education of the Handicapped Act Amendments); P. L. 99-506 (Rehabilitation Act Amendments); P. L. 100-146 (Developmental Disabilities Assistance and Bill of Rights Act Amendments); P. L. 100-294 (Child Abuse Prevention, Adoption and Family Services Act); and P. L. 100-485 (Family Support Act). Second, survey data regarding state-adopted family-oriented support principles, paradigms and practices obtained from policy-maker and "street-level" (Dokecki & Heflinger, 1989) practitioners and consumers were analyzed.

Federal Laws and Congressional Reports Three nonfamily-oriented (P.L.94-142,P.L. 99-199, P.L. 99-506) and four family-oriented (P.L. 99-457, P.L. 100-146, P.L. 100-294, P.L. 100-485) pieces of legislation were included in our analysis. Both the laws and their accompanying congressional reports (collectively described hereafter as writs) were judged against six sets of family support principles (Dunst, 1990). Both sets of documents were rated separately using the same 7-point rating scale for each of 30 principles in the six categories listed in Table 1. The rating scale measured the extent to which laws/reports promulgated provision of resources and supports to families in ways that (a) neither implicitly nor explicitly adopted, (b) implicitly adopted, or (c) explicitly adopted each of the principles. These data permitted both between- and within-writ comparisons to establish the degree of family-centeredness of each piece of legislation.

State-Level and Street-Level Perspectives of

Family-Centered Policies and Practices Two sets of data were gathered from (a) state-level policymakers (Part H Program Coordinators and ICC [Interagency Coordinating Council] Chairpersons) and (b) "street-level" practioners and consumers (members of the state ICC) to establish the degree of family-centeredness of state-level early intervention programs. These data were obtained as part of an ongoing national study of State Part H Early Intervention Programs. When this article was written, complete sets of state-level and street-level data were available for 25 states, divided into three groups organized by lead agency: education (n=7), health (n=8), and human services (n=10). The human services group includes states in which the lead agencies were state departments of human resources, mental retardation, mental health, developmental disabilities, public welfare, or economic security.

Both the state-level policymakers and street-level practioners and consumers were asked to indicate on a 5-point rating scale the extent to which they agreed or disagreed that each family support principle listed in Table 1 represented the official policy or position within their state. The respondents were also asked to indicate the extent to which they agreed or disagreed that 42 statements reflected the official position of the state regarding family-oriented intervention practices. The statements were equally divided into three groups of 14 items corresponding to three different program paradigms: family-centered, family-focused, and combined family-allied/professional-centered. (Because most items in the combined paradigm corresponded to family-allied program practices, this combined model is hereafter referred to as family-allied.) The items were selected to cover a number of areas of early intervention practices, including individualized family service plans (IFSPs), case management, assessment practices, intervention practices, transitions, and family involvement.

RESULTS AND DISCUSSION The findings from the analysis are organized according to the three dimensions of the program parameters framework: family support principles, program paradigms, and intervention practices.

Family Support Principles Federal Laws and Congressional Reports. A 7 Between Laws x 2 Between Writ (Laws vs. Reports) x 6 Within Family Support Principles Categories ANOVA was used to analyze the extent to which the family-and nonfamily-oriented federal laws and congressional reports were consistent with the intents of family support principles. The dependent measure was the individual ratings for the items within each support category (Dunst, 1990). The analysis yielded a main effect for laws, F(6, 56) = 15.45,p<.0001; a main effect for principles categories, F(5,280) = 3.36,p <.01; and a Law x Principles category interaction, F(30,280) = 1.64,p<.05. Post hoc orthogonal contrasts were used to tease apart the significant findings. The combined mean score (M = 4.48) for the family-oriented pieces of legislation (P.L. 99-457, P.L. 100-146, P.L. 100-294, P.L.100-485) differed significantly from the combined mean score (M = 3.87) for the nonfamily-oriented laws (P.L.94-142,P.L.89-199,P.L. 99-506), F(1, 56) = 28.22,p<.001, indicating that the family-oriented laws showed a greater presumption toward being family centered.

A comparison between the combined mean score (M = 3.92) for the P.L.94-142 and P.L.98-199 Education for the Handicapped Act pieces of legislation and the mean score (M = 4.83) for the P. L. 99-457 Amendments to the Act was statistically significant, F(1, 56) = 26.71,p<.0001. This finding indicates that the P.L. 99-457 Amendments (mostly due to the Part H Early Intervention Program) have "grown toward" a family-centered piece of legislation over the course of the various reauthorizations.

The difference between the mean score (M = 4.87) for the P.L. 99-457 and P.L. 100-146 Developmental Disabilities Act pieces of legislation and the mean score (M = 4.13) for the two nondisabled-focused family-oriented laws (P.L. 100-294, P.L. 100-485) was also statistically significant, F(1, 56) = 31.82,p<.0001, indicating that the two pieces of federal legislation that promote services to persons with disabilities and their families are more family centered than the Child Abuse Prevention and Family Services Act and the Family Support Act.

A comparison between the family-oriented P.L. 99-457 Education Act (M = 4.83) and the P.L. 100-146 Developmental Disabilities Act (M = 4.90) produced nonsignificant results, F(1,56) = 0.11, p>.05. This finding indicates that both pieces of legislation are very similar with respect to the degree to which they show a presumption toward being family centered.

Figure 1 shows the data from the above set of analyses in terms of the percentage of family support principles that were rated as not adopted, implicitly adopted, or explicity adopted. Display of the data in this way is instructive for a number of reasons. First, it is clear that all the pieces of legislation to a large extent were rated as implicitly consistent with the intent of family support principles. Second, it is equally clear that the differences between the nonfamily and family-oriented laws are mostly due to the fact that P.L. 99-457 and P.L. 100-146 (the legislation focusing on individuals with developmental disabilities and their families) show a greater presumption toward explicit adoption of the principles. Third, it is worth noting that P.L. 100-294 and P.L. 100-485, both of which are supposed to be family oriented, do not look much different with respect to explicit adoption of family support principles compard to the three pieces of non-family-oriented legislation. Taken together, the data from these sets of analyses converge on the conclusion that P.L. 99-457 and P.L. 100-146 are to a large degree consistent with the intent of family support principles and show a greater presumption toward being family centered compared to all other pieces of legislation.

National Survey of Family-Oriented Intervention Practices. A 3 Between Lead Agency (Education vs. Health vs. Human Services) x 2 Between Level (State-Level vs. Street-Level) x 6 Within Family Support Category ANOVA was used to analyze the family support principles data from our national survey of early intervention programs. The dependent measure was the sum of scores within each family support principle category (see Table 1). The analysis yielded a main effect for levels, F(1,44) = 11.67,p<.001, and a main effect for principles categories, F(5, 220) = 6.00,p<.001. Post hoc tests of the principles data showed that the mean scores for the sense of community (M = 8.30) category differed significantly from the family integrity (M = 8.90), strengthening family functioning (M = 8.90) and collaboration (M = 9.10) categories.

The mean scores for the state-level (M = 9.37) and street-level (M = 8.07) respondents indicated that the practitioners and consumers considered the state-level adoption of family support principles less family centered compared to the state-level policymakers. Figure 2 shows these data in terms of the percentage of family support principles that were rated differently by the state-level and street-level respondents. State-level respondents almost uniformly indicated that they strongly agreed that nearly all the principles represented the official position in their states. The street-level respondents generally did not agree as strongly. Fewer principles were rated in a similar manner by the street-level respondents. This was especially true for the respondents from the education and human services lead agency states. These data clearly reflect a discrepancy between what state-level policymakers say their "values" are and what street-level practitioners and consumers believe the states' stance is with respect to adoption of the family support principles.

Intervention Paradigms A 3 Between Lead Agency (Education vs. Health vs. Human Services) x 2 Between Level (State-Level vs. Street-Level) x 3 Within Paradigm (Family-Centered vs. Family-Focused vs. Family-Allied) ANOVA was used to establish the extent to which state-promulgated early intervention practices were consistent with different family-oriented paradigms. The dependent measure was the sum of the ratings for the practice indicators corresponding to the three models examined as part of our national survey. The analysis yielded a main effect for paradigms, F(2,88) = 35.52,p<.001, which was qualified by a Level x Paradigm interaction, F(2,88) = 8.70,p<.001, and a Lead Agency x Paradigm interaction, F(4, 88) = 5.89,p<.05. Figure 3 displays the data for these interactions. The state-level respondents indicated that the practices they believed were being promulgated by their states were more family centered than family allied. Pairwise comparisons between the three family-oriented models were statistically significant for all three sets of post hoc analyses. In contrast, only the street-level respondents in the health lead agency states viewed their state-level position as promulgating family-centered practices over practices consistent with the other two family-oriented models. The street-level respondents in both the education and human services lead agency states fundamentally assessed their states as promulgating practices in ways equally consistent with all three models.

Intervention Practices Figure 4 displays data specifically in terms of the percentage of family-centered practice indicators that were rated differently by the state-level and street-level respondents as part of our national survey. What is clear about these data is the fact that the street-level practitioners and consumers view their states as being much less family centered compared to their state-level counterparts. These findings corroborate the results from the family support principles analysis (see Figure 3), indicating that the street-level respondents do not agree with the state-level perspective regarding the extent to which promulgated practices are family centered. Although the data from the principles and practices analyses of the national study may be interpreted in a number of ways, we believe the findings to a large degree represent an "implementation lag" between establishing the parameters of a family-centered program and translating promulgated beliefs and recommended practices into actual service-delivery efforts.

GENERAL DISCUSSION A triangulated program parameters framework was used to synthesize and analyze early intervention policies and practices with the specific aim of discerning degree of family-centeredness. Our analysis showed that family-oriented early intervention policies and practices are predominately characterized as being family-focused, although there is an emerging presumption toward adoption of family-centered models and practices. This is consistent with early intervention literature which is also primarily family-focused in terms of what scholars consider state-of-the-art, family-oriented intervention practices (Johnanson, Dunst, & Trivette, 1991).

The presumption toward adoption of family-centered early intervention policies and practices should be understood within the broader based context of other family resource and support movements. As noted earlier in this article, there are four other movements that embrace various elements of family-centered policies and practices. All five movements until recently have unfolded in a relatively independent fashoion. Yet scholars and practitioners in each movement have basically come to the conclusion that families should play a major role in shaping the direction of resources and supports they receive, and that resources and supports ought to be provided in ways that strengthen the capabilities of families. Why have these different but corroborative efforts uniformly come to the same conclusion? The answer in part derives from a growing body of evidence indicating that interventions that are family centered are more likely to have broad-based positive influences on a number of aspects of child, parent, and family functioning (see Kagan, Powell, Weissbourd & Zigler, 1987; Powell, 1988; Weiss & Jacobs, 1988; Weissbourd & Kagan, 1989).

The emerging interest in family-centered early intervention policies and practices should be understood from another perspective as well. The heritage of these efforts--the child-focused and deficit-oriented parenting programs of the 1960s and 1970s--is a mixed blessing. On the one hand, these efforts provide a rich history regarding what can be done to effectively influence parenting capabilities. On the other hand, the parternalistic orientation of these programs is at least one legacy that has been difficult to overcome (Zigler & Berman, 1983) and is a major factor that is likely to hinder further advances.

What can be done to promot further efforts to become more family centered in the early intervention field? Early intervention policymakers and practitioners would benefit immensely by taking advatage of what has been learned from family-centered efforts in the other family support and resource movements (see especially Dunst et al., 1990; Weissbourd, 1990). For the most part, early intervention scholars and practitioners in the P.L.99-457 tradition rarely look beyond their narrowly defined perspective of family-oriented programs, at least as indicated by the number of times material in the other family support and resource movement literature is cited.

Early intervention policies and practices have come a long way, in a short period of time, toward becoming family centered. And although these social intervention efforts have some way to go before they are more family centered than family focused, the momentum is clearly evident. Further shifts in adoption of family-centered approaches are more likely to occur if we take full advantage of the broader based orientations available for conceptualizing family-centered policies and practices.

REFERENCES Able-Boone, H., Sandall, S.R., Loughry, A., & Frederick, L.L. (1990). An informed, family-centered approach to Public Law 99-457: Parental views. Topics in Early Childhood Special Education, 10(1), 100-111. Barber,P.A., Turnbull, A.P., Behr, S.K., & Kerns, G. M. (1988). A family systems perspective on early childhood special educatio. In S.L. Odom & M.B. Karnes (Eds.), Early intervention for infants and children with handicaps (pp.179-198). Baltimore: Paul H. Brookes. Brewer, E., McPherson, M., Magrab, P., & Hutchins, V. (1989). Family-centered, community-based, coordinated care for children with special health care needs. Pediatrics, 83, 1055-1060. Brown, W. (1990). Early intervention regulations: Annotation and analysis of Part H. Horsham, PA: LRP Publications. Brown, W., Pearl, L., & Carrasco, N. (1991). Evolving models of family-centered services in neonatal intensive care. Children's Health Care, 20(1), 50-55. Burnim, A. (1990). 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Report 99-860: Education of the Handicapped Act Amendments. 99th Congress, 2nd Session. U. S. Senate Report 100-113. (1987). Developmental Disabilities Assistance and Bill of Rights Act Amendments. U. S. 100th Congress, 2nd Session. Weiss, H. (1989). State family support and education programs. American Journal of Orthopsychiatry, 59, 32-48. Weiss, H., & Jacobs, F. (Eds.). (1988). Evaluating family support programs. Hawthorne, NJ: Aldine de Gruyter. Weissbourd, B. (1987). A brief history of family support programs. In S. L. Kagan, D. R. Powell, B. Weissbourd, & E. Zigler (Eds.), America's family support programs (pp. 38-56). New Haven: Yale University Press. Weissbourd, B. (1990). Family resource and support programs: Changes and challenges in human services. Prevention in Human Services, 9(1), 69-85. Weissbourd, B., & Kagan, S. L. (1989). Family support programs: Catalysts for change. American Journal of Orthopsychiatry, 59, 20-31. Zigler, E., & Berman, W. (1983). 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Title Annotation:Special Issue: Trends and Issues in Early Intervention; analysis of laws, legislation, state-policies and services affecting families
Author:Dunst, Carl J.; Johanson, Charlie; Trivette, Carol M.; Hamby, Debbie
Publication:Exceptional Children
Date:Oct 1, 1991
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