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Creating family-centered services in early intervention: perceptions of professionals in four states.

Early intervention programs for young children with disabilities are rapidly expanding as states and local communities prepare to meet requirements for services established by Public Law 99-457. This expansion is significant and should result in greater access to programs for previously unserved children and an increasingly broad array of service options. In the midst of this expansion phase, however, professionals working in early intervention programs are also experiencing a substantial shift in fundamental assumptions about best practice. In short, professionals are being told that early intervention must be family centered. The purpose of this article is to discuss issues that arise when significant changes are expected in professional practice, and to present data in which current practices in family involvement are compared with practices embedded in a family-focused approach to services. Barriers to change are identified, and implications for fostering change are discussed.

WHAT IS A FAMILY-CENTERED

APPROACH TO SERVICES?

The impetus for a family-centered approach to early intervention comes from two primary sources: The law and current conceptualizations of "best practice." Perhaps the most obvious statement of a family focus in P.L. 99-457 is the requirement for an Individualized Family Service Plan (IFSP) for programs serving infants and toddlers up to 36 months of age. The IFSP must include, in addition to the child-related components required in the individualized education program (IEP), a documentation of family strengths and needs, a specification of major family outcomes, a description of services to be provided for the family, and the name of a case manager who is to assist the family in implementing the plan and coordinating service with other agencies and persons.

The IFSP is reflective of shifting views about what constitutes best practice in early intervention for infants and toddlers as well as for pre-school-age children. Traditionally early intervention has been viewed as a child-focused endeavor, the major purpose of which was to enhance the development outcomes for young children with disabilities. Over the past 5 years, however, it has been argued that a primary mission for early intervention is family support. According to Zigler and Black (1989), the ultimate goal of family support programs is "to enable families to be independent by developing their own informal support networks" (p. 11). In early intervention, numerous labels have been applied to the family support movement, including parent empowerment (Dunst, 1985; Dunst, Trivette, & Deal, 1988), family-focused intervention (Bailey et al., 1986), and family-centered care (Shelton, Jeppson, & Johnson, 1987). Although these models differ in some respects, each incorporates the following basic assumptions:

* Children and families are inextricably intertwined. Intentional or not, intervention with children almost invariably influences families; likewise, intervention with and support of families almost invariably influence children.

* Involving and supporting families is likely to be a more powerful intervention than one that focuses exclusively on the child.

* Family members should be able to choose their level of involvement in program planning, decision making, and service delivery.

* Professionals should attend to family priorities for goals and services, even when those priorities differ substantially from professional priorities.

IMPLICATIONS OF A FAMILY-CENTERED

APPROACH FOR

PROFESSIONALS

A consistent theme underlying the family support movement is that a reconceptualization of early intervention is needed (Dunst, 1985). This reconceptualization will require professionals to take on new roles and learn new skills. More fundamentally, moving toward a family-centered approach in early intervention will require a basic change in the way most early intervention services are now provided. This change is not a minor shift in practice that can be implemented with a small amount of training and support; rather, professionals are being asked to make a change of such magnitude that its implementation will likely be a difficult and sometimes arduous process. Recent studies by Mahoney, O'Sullivan, and Fors (1989) and Mahoney and O'Sullivan (1990) suggest that early intervention programs still are very child focused in their work.

What is it about becoming family centered that is such a difficult change? First, it is a large rather than small change. Although most adults can accommodate to occasional changes in work demands, accommodation in more difficult and is likely to be resisted if the change differs substantially from current practice. Second, providing goals and services for families is different from the role expectations and training of many professionals, who would define themselves as experts in child development and the treatment of delays or disorders in young children. Most therapists and teachers enter their respective fields out of a desire to work with children, and they receive training that is almost exclusively child focused (Baily, Simeonsson, Yoder, & Huntington, 1990). Third, a family-centered philosophy challenges the long-held view of the professional as the primary decision maker in the management of young children with disabilities, because a fundamental tenet of the family support movement is family choice and a responsiveness to family priorities (Bailey, 1987). Relinquishing control of decisions about the nature and extent of early intervention services is likely to be viewed as threatening by many professionals. Fourth, professionals work in service=delivery systems designed to provide child-based services. Changing certain practices may not be an option for individual professionals working in systems that are resistant to change. Finally, each of these factors is exacerbated by the uncertainty surrounding the actual implementation of a family-centered approach and the specific requirements for practicing professionals. Many states have yet to develop guidelines for the IFSP or to provide comprehensive training for professionals with regard to either the guidelines or skills and proceduces needed to implement the law (Harbin, Gallagher, & Lillie, 1989).

The presdent study was designed to answer three broad questions:

* What is the current status of a family-centered approach in infant intervention programs? To answer this question, professionals in early intervention programs in four states were asked to rate current program practices in four areas of family support.

* Do professionals perceive a discrepancy between current and ideal practices in working with families? To answer this question, professionals were asked to rate how they felt families should be involved in each of four areas of family support.

* What do professionals perceive to be the barriers that make it difficult to achieve ideal levels of family involvement?

METHOD

Subjects

The initial pool of subjects consisted of 237 professionals working in early intervention programs or agencies responsible for providing early intervention programs for infants and toddlers in four states: two southern states (A and B), a midwestern state (C), and a northeastern state (D). In each state, the subjects were voluntary participants in a workshop on family assessment and the IFSP. A number of participants failed to respond to one or more items on the survey (n = 57) and subsequently were dropped from the current analysis. This resulted in a final pools of 180 professionals distributed across the four states as follows: A (n = 30), B (n = 30), C (n = 40), D (n = 80). Demographic data were collected in three states at the time of the study, and had previously been collected in the fourth state as part of an earlier study. The subjects were predominantly female (95%) and Caucasian (94%). The average professional had worked for 9.5 year s with young children with disabilities. Approvimately 75% were direct service providers or consultants (teachers, therapists, psychologists, and social workers), and 25% were program or agency administrators.

Instrumentation

To assess typical and ideal practices, rating scales were developed to assess four dimensions of family involvement: (a) parent participation in decisions about the child assessment process, (b) parent involvement in child assessment, (c) parent participation in the team meeting and decision making, and (d) provision of family services. Each scale represents a 10-point continuum, with descriptive anchors for ratings of 1, 3, 5, 7, and 9. A rating of 1 reflects an approach to services that is predominantly controlled by professionals (e.g., parents receive information presented by professionals and sign the IEP/IFSP), whereas a rating of 9 reflects an approach to services in which parents are allowed choices and responsibility (e.g., parents many choose to lead the team meeting and write the IEP/IFSP). Each of the four rating sales is shown in Figure 1.

Procedure

In three states (A, B, and C), the four scales were distributed at the beginning of the workshop, whereas in the fourth state they were distributed before the workshop and mailed back to the authors. In each case, the scales were described as a mechanism for helping participants prepare for the training by considering current practices and identifying ways in which their programs might change. General instructions were first read; then participants were asked to read the anchors on the scales and complete four steps. First, they drew a circle on the scale to indicate the range within which their program currently involved families in the particular dimension assessed. For example, a participant may have indicated a range from 1 to 5 on the scale related to parent participation in decisions about the child assessment process, showing that for some families in their program professionals make all decisions about who is to assess and what is to be assessed (a rating of 1), but for other families professionals present an assessment plan and ask parents for feedback (a rating of 5).

Second, participants were asked to write the number that best reflected how their program typically operated. Third, they wrote the number that reflected how they felt families ideally should be involved. Finally, if there was a discrepancy between typical and ideal ratings, respondents were asked to identify barriers that made it difficult to implement idea practices. Participants were assured anonymity of results and given 30 minutes to respond to the scales. Their responses were then used to facilitate a discussion of issues and considerations in becoming family centered.

RESULTS

Analyses were conducted to answer five questions.

* How do professionals rate the current status of family involvement across the four states?

* How do professionals rate ideal roles of families?

* Do professionals' ratings indicate a discrepancy between current and best practices?

* What barriers do professionals identify as contributing to any perceived discrepancies between typical and ideal practices?

* Do ratings of typical and ideal practices vary across states?

[TABULAR DATA OMMITED]

Current Status of Family Involvement

The current status of family involvement in each of the four dimensions is shown in Table 1. The table presents the average range reported by professionals across the four states as well as the mean ratings of typical involvement in each dimension. Across the four scales, professionals rated typical family involvement in the 4-5 range, reflecting a moderate degree of family involvement.

Ideal Roles of Families

The idea family roles in each of the four dimensions are also shown in Table 1. Across the four scales, professionals rated ideal family involvement in the 7-8 range, reflecting a high degree of family involvement.

Discrepancies Between Typical and Ideal

Roles

The discrepancies between typical and ideal roles are shown in Figure 2. Substantial differences between typical and ideal levels of family involvement are evident in each dimension. Not only is there a substantial difference between the typical and ideal means in each, but also there is virtually no overlap in the range of responses for each.

To test the magnitude of differences between typical and ideal roles, four sets of paired t-test comparisons, one for each item, were conducted. Each comparison was highly significant, with t values ranging from 14.3 to 16.3 (p<.0001).

Barriers to Family Involvement

Coding Procedure. Four major barriers to implementing ideal practices in early intervention programs were identified and defined on the basis of a small sample of responses to the survey questions. The four categories--family, system, professional, and testing--represented the array of barriers identified in the preliminary sample and were assumed to reflect the potential range anticipated in the complete data set. Subcategories within three of the four broad categories were specified and defined in the same manner, and are shown in Table 2.

Three coders, doctoral students in special education and school psychology, independently read each response and assigned a code based on the definitions of barriers. The coders used multiple codes when appropriate. For example, when a respondent identified two separate barriers, a separate code was assigned to each one. However, if a respondent mentioned the same barrier twice within a single response, it was coded only once. When the response lacked clarity or did not fall clearly into any category, coders used "no code."

After each response was independently coded, the coders met to reach consensus for all items on which there was at least one disagreement. First, the coders reached an agreement about the number of responses labeled "no code." Second, the coders reached agreement about the number of distinct barriers within each response. Finally, the coders reached agreement about the most appropriate code for each barrier identified (consensus code).

Reliability. Consensus codes were used as the standard against which the reliability of the original data could be evaluated. Percent of agreement with the consensus code was calculated by dividing the number of agreements by 3 (the number of coders) and multiplying by 100. Percent of agreement was computed for each of the 730 barriers coded. The mean percent agreement was calculated for each coding category and subcategory. The overall mean percent among coders was 94.5%. The mean percent agreements for each of the coding categories and subcategories are shown in Table 3.

Results. The percentage of barriers to family involvement mentioned most frequently in three of the four states (data were not available for State A) are shown in Table 4. A visual analysis indicated that the states did not differ markedly in the distribution of their ratings. Generally, family and system barriers were mentioned most frequently, followed by professional barriers. Testing barriers accounted for a relatively small proportion of the total barriers mentioned.

Figure 3 shows the percentage of barriers mentioned most frequently across the four dimensions of family involvement. Family and system barriers were mentioned most frequently in three of the dimensions. In the fourth area, provision of family services, system barriers were mentioned most frequently by all states.

Cross-State Variability

The mean ratings of typical and ideal practices are displayed by state in Figures 4 and 5. To determine the extent to which the four states varied, eight separate analyses of variance were conducted (typical and ideal ratings on each of the

[TABULAR DATA OMITTED]

TABLE 3

Mean Percentages of Interior Agreement
Barrier Category Mean
Family
 Knowledge or skill 97.83
 Attitude 97.51
 Resources and 95.17
 function
 Other 97.88
System
 Institutional 87.31
 Resource 95.08
 Status quo 95.05
Professional
 Knowledge or skill 89.25
 Attitude 91.05
Testing 95.14


TABLE 4

Barriers to Change
 No. of %
Barrier Type Statements of Total
Family (total) 261 35.8
 Knowledge/skill 94 12.9
 Attitude 122 16.7
 Resources and 29 4.0
 function
 Other 16 2.2
System (total) 256 35.1
 Institutional 16 2.2
 Resource 110 15.1
 Status quo 130 17.8
Professional (total) 108 14.8
 Knowledge/skill 44 6.0
 Attitude 64 8.8
Testing 7 .9
Not codable 97 13.4


four scales). Two comparisons of typical practices were significant: parent participation in child assessment (F = 4.42, df = 3,176, p<.01) and provision of family goals and services (F = 4.78, df = 3,176,p<.01). In both comparisons the difference was accounted for primarily by the discrepancy between states B and C. Two comparisons of ideal practices were significant: parent participation in decisions about child assessment (F = 8.73, df= 3,176, p<.001) and parent participation in team meeting and decision making (F = 3.21, df = 3,176,p<.05). The difference on the first scale was accounted for primarily by the discrepancy between states A and D, whereas the difference on the second scale was accounted for primarily by the discrepancy between states B and D.

A visual analysis of the distribution across states shown in Figures 4 and 5 suggests that the statistical differences found actually represent relatively small variations in ratings across the four states. The greatest differences observed in comparing any two states was 1.5 points on the scale, reflecting a relatively small difference in what actually occurs.

DISCUSSION

This study documents the perceptions of early intervention professionals in four states regarding typical and ideal practices in four areas of family involvement. The study is limited due to several factors: (a) it is unknown how representative the professionals in the study are of all early intervention professionals within each state; (b) the generalizability to other states is uncertain; and (c) the self-report nature of the data means that it only describes perceptions of practices, rather than documenting actual practices. Nonetheless, three consistent findings of importance emerged from the study. First, professionals perceive a substantial discrepancy between how they currently involve families in early intervention programs and how families ideally should be involved. The magnitude of the discrepancy is statistically significant, and an inspection of the mean values for each scale indicates that the discrepancy represents a clinically relevant difference in approaches to service delivery. Furthermore, the discrepancies are consistent across each of the four domains of parent involvement.

Second, professionals readily identified reasons for the discrepancies. Family barriers and system barriers were equally mentioned overall and collectively accounted for more than 70% of the barriers identified. This pattern was relatively stable across three domains of parent involvement; a different pattern emerged for the provision of family services, where systems barriers accounted for more than 50% of the statements. Only 15% of the barriers mentioned reflected a lack of skills or knowledge on the part of professionals.

Finally, the findings generally were stable and consistent across the four states. Although some statistically significant differences among states were found in some items on ratings of typical and ideal practices, an inspection of the means indicates that these likely represent relatively small differences in actual practice. All states reported significant discrepancies between typical and ideal practices, and the pattern of barriers reported was generally stable across states.

The data collected extend that reported in other studies (Mahoney & O'Sullivan, 1990; Mahoney, O'Sullivan, & Fors, 1989) and suggest that states will need to make substantial changes if they are to fulfill the family-focused mandate and intent of P.L. 99-457. The gap between typical and desired practices is substantial. Furthermore, practicing professionals readily admit that a discrepancy exists. The reasons mentioned for the discrepancy, however, raise concerns about the nature and magnitude of change required and suggest that traditional mechanisms for achieving change in practice (e.g., inservice training) may need to be part of the larger systemic effort. For example, many professionals cited the following systems factors as major barriers to change: lack of administrative support, inadequate resources, the difficulty inherent in changing established patterns of practice, or inconsistent philosophical perspectives between administrators and practitioners. The need for administrative support in facilitating change has been documented in the research literature (e.g., Ingvarson & MacKenzie, 1988) and was cited in recent studies as a major factor limiting the family focus of early intervention programs in other states (Mahoney & O'Sullivan, 1990; Mahoney. O'Sullivan, & Fors, 1989). Winton (1990) has argued for a aystemic approach to inservice training, suggesting that training be directed toward "organizational families," including administrators and other key decision makers.

Professionals also suggested that many families may not have the knowledge or skills to participate fully in early intervention planning and decision making, or may not be interested in these roles. These concerns raise a number of implications. One possibility is that some parents may need additional training or support to participate at the level they choose. A second possibility is that parents could be involved in making decisions about the change process if programs are to be more family focused. Finally, professionals may need to examine their philosophy and values concerning family competence and preferences.

Why were professionals unlikely to cite personal limitations (e.g., "I don't have the skills needed to perform this role") as barriers to implementing a family focus? One explanation, of course, is that they did, in fact, believe that they were skilled in working with families. This is not likely, given the lack of family content in most preservice training programs (Bailey, Simeonson, Huntington, & Yoder, 1990). Furthermore, Bailey, Buysse, and Palsha (1990) found that professionals rated themselves as low in skills and knowledge related to working with families. An alternative expplanation is that family and systems issues seemed so enormous that the acquisition of professional skills was viewed as comparatively insigmificant. Clearly inservice training will be needed, but perhaps alternative approaches are necessary.

This study extends our knowledge about factors that facilitate or limit change in professional practices. Ultimately, states will need to design systems that are organized in ways likely to recognize the need for new practices and to act accordingly to create the possibilities for change to occur. Likewise, professionals need to view themselves as systems change agents and work toward the implementation of practices they and the clients they serve perceive to be important. Inservice training can help facilitate this process by addressing the system as the unit of change rather than the individual, as well as by helping individuals and teams design strategies for changing existing systems. Through a dual and collaborative effort such as this, perhaps systems can be created to respond quickly to new ideas and implement them in a timely and efficient fashion.

REFERENCES

Bailey, D. B. (1987). Collaborative goal getting: Resolving differences in values and priorities for services. Topics in Early Childhood Special Education, 7(2), 59-71.

Bailey, D. B., Buysse, V., & Palsha, S. A. (1990). Self-ratings of professional knowledge and skill in early intervention. Journal of Special Education, 23, 423-435.

Bailey, D. B., Simeonsson, R. J., Winton, P. J., Huntington, G.S., Comfort, M., Isbell, P., O'Donnell, K. J., & Helm, J. M. (1986). Family-focused intervention: A functional model for planning, implementing, and evaluating individualized family services in early intervention. Journal of the Division for Early Childhood, 10, 156-171.

Bailey, D. B., Simeonsson, R. J., Yoder, D., & Huntington, G.S. (1990). Infant personnel preparation across eight disciplines: An integrative analysis. Exceptional Children, 57,26-35.

Dunst, C. J. (1985). Rethinking early intervention. Analysis and Intervention ni Developmental Disabilities, 5, 165-201.

Dunst, C. J., Trivette, C. M., & Deal, A. G. (1988). Enabling and empowering families: Principles and guidelines for practice. Cambridge, MA: Brookline Books.

Harbin, G., Gallagher, J.J., & Lillie, T. (1990). States' progress related to fourteen components of P.L. 99-457, Part H. Chapel Hill: Carolina Policy Studies Program, Frank Porter Graham Child Development Center, University of North Carolina at Chapel Hill.

Ingvarson, L., & MacKenzie, D. (1990). Factors affecting the impact of inservice course for teacher: Implications for policy. Teaching and Teacher Education, 4, 139-155.

Mahoney, G., & O'Sullivan, P. (1990). Early intervention practices with families of children with handicaps. Mental Retardation. 28, 169-176.

Mahoney, G., O'Sullivan, P., & Fors, S. (1989). The family practices of service providers of young handicapped children. Infant Mental Health Journal, 10(2), 75-83.

Shelton, T. L., Jeppson, E. S., & Johnson, B. H. (1987). Family-centered care for children with special health care needs. Washington, DC: Association for the Care of Children's Health.

Winton, P.J. (1990). A systemic approach for planning inservice training related to Public Law 99-457. Infants and Young Children, 3(1), 51-60.

Zigler, E., & Black, K. B. (1989). America's family support movement: Strength and limitations. American Journal of Orthopsychiatry, 59, 6-19.

ABOUT THE AUTHORS

DONALD B. BAILEY, JR. (CEC NC Federation) is the Director of Early Childhood Research: VIRGINIA BUYSSE (CED Chapter #857) is a Research Associate and doctoral Candidate in Special Education; and REBECCA EDMONDSON and TINA M. SMITH are Research Assistants and Doctoral Students in School Psychology at the Frank Porter Graham Child Development Center at the University of North Carolina, Chapel Hill.
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Copyright 1992 Gale, Cengage Learning. All rights reserved.

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Author:Bailey, Donald B., Jr.; Buysse, Virginia; Edmondson, Rebecca; Smith, Tina M.
Publication:Exceptional Children
Date:Feb 1, 1992
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