TRACE: Excellence in Child Find & Early Identification

1. TRACE Tracking, Referral and Assessment Center for Excellence Discerning What Works Best In Improving Child Find, Early Identification and Referral Practices Carol M. Trivette, Ph.D. Carl J. Dunst, Ph.D. Center for Improving Community Linkages Orelena Hawks Puckett Institute Asheville, North Carolina  Morganton, North Carolina  Grants, New Mexico  Austin, Texas Stephen Bagnato, Ed.D. UCLID Center Children’s Hospital Pittsburgh, Pennsylvania Presentation made at the Office of Special Education Programs Early Childhood Conference  Washington, DC  February, 2005

2. Purposes of the Presentation 1 Describe the activities and products of the Tracking, Referral and Assessment Center for Excellence (TRACE). 2 Describe examples of TRACE studies completed-to-date, findings, and evidence-based practice guides.

3. Center Aim The major aim of TRACE is to identify and evaluate the use of evidence-based practices and models for improving child find, referral, early identification, and eligibility determination for infants, toddlers, and preschool children with developmental delays or disabilities eligible or potentially eligible for early intervention or preschool special education.

4. TRACE Collaborators Orelena Hawks Puckett Institute Carl J. Dunst, Ph.D., and Carol M. Trivette, Ph.D. UCLID Center/Children's Hospital of Pittsburgh Stephen Bagnato, Ed.D. Institute for Family-Centered Care Beverly Johnson, B.S. Family, Infant and Preschool Program M'Lisa Shelden, Ph.D. American Academy of Pediatrics Thomas F. Tonniges, M.D., and Amy Brinn, M.A. University of Connecticut Health Center Mary Beth Bruder, Ph.D.

5. TRACE Model Population-Based Sources of Information on Children Birth to Five Years of Age (Risk Registries, Hospitals, Physicians, Child Care Programs, etc.) Eligibility Determination Child Find Program Enrollment Referral Preschool Special Education Early Identification Early Intervention TRACE uses a model that is the basis for investigating the relationship between child find, referral, and early identification, and both eligibility determination and enrollment in Part C or Part B(619) programs.

6. Child Find Child find means the methods and procedures, and efforts and activities, used by Part C or Part B(619) program practitioners to locate infants, toddlers and preschoolers who are in need of, or potentially in need of, Part C Early Intervention or Part B(619) Preschool Special Education.

7. Referral Referral means the procedures or steps taken by an individual or group on behalf of an infant, toddler or preschooler to obtain the opinion, supports or services of another individual or group on behalf of a child. Referralis used specifically by TRACE to encompass a range of activities influencing decision-making processes used by primary referral sources to recommend or suggest child participation in an early childhood intervention program, and the decisions made by parents to seek out early childhood intervention program practitioner opinion or advice.

8. Early Identification Early identification refers to a broad range of methods, procedures, and practices used to determine the presence of a condition or identified disability that results in a developmental delay, or places a child at-risk for a developmental delay or poor outcome.

9. Eligibility Determination Eligibility means the procedures and criteria used to determine if a child meets the definitions established by States and Jurisdictions for Part C or Part B(619) program enrollment. Eligibility determination is a Part C/Part B(619) program-specific activity that links early identification with enrollment of children in early intervention or preschool special education.

10. Tracelines Tracelines are Web-based journal articles about the conceptual and operational frameworks for guiding the conduct of TRACE activities. These Web-based journal articles integrate available information about TRACE-related practices, and provide a forum for advanced understanding of child find, referral, early identification, and eligibility determination practices.

11. Snapshots Snapshotsinclude profiles and analyses of state and local early intervention and preschool special education child find, referral, early identification, and eligibility determination data and practices. They also include findings from TRACE studies and investigations.

12. Milemarkers Milemarkersare bibliographies of published papers and reports that are especially useful for understanding the purposes and functions of child find, referral, early identification, and eligibility determination practices.Milemarkersinclude sources of information from both early intervention and preschool special education as well as other fields of inquiry (e.g., social marketing) that inform the development and conduct of TRACE activities.

13. Cornerstones Cornerstones are practice-based research syntheses of studies related to child find, early identification, referral, and eligibility determination. These syntheses involve systematic analysis and integration of small bodies of research that have investigated the same or similar practices leading to the same or similar outcomes. The preparation of Cornerstones is done in a manner that clearly establishes the way in which particular characteristics or components of practices are related to specific outcomes.

14. Endpoints Endpoints are non-technical summaries of practice-based research syntheses. Endpoints describe the practice that constituted the focus of analysis, and inform the reader about the extent to which available research evidence supports the use of a practice. Written in a user-friendly format, these summaries are designed for non-researchers, including practitioners and parents.

15. Trailblazer Tool Kits Trailblazer Tool Kits are collections of evidence-based practice guides focusing on one major category of TRACE activities (e.g., child find) and a particular set of practices within a major category (e.g., public awareness). Tool Kits are prepared in ways providing early intervention and preschool special education personnel different choices and options for improving child find, referral, early identification, and eligibility determination practices.

16. TRACE Web Site www.tracecenter.info

18. Highlights of Major TRACE Accomplishments American Academy of Pediatrics Initiatives TRACE Research Studies Practice-Based Research Syntheses Evidence-Based Practice Guides

19. American Academy of Pediatrics Initiatives 1 Development and study of a universal referral form for increasing referrals to early intervention and preschool special education Development and study of a physician screening checklist for identifying children who may be eligible for early intervention or preschool special education Periodic survey of AAP members’ beliefs about qualified early childhood practitioners 2 3

20. AAP Universal Referral Form

21. Field Testing and Investigating the Effects of the Universal Referral Form Field testing is being conducted with AAP members to identify any further changes in the referral form content. Evaluation of the referral form will be assessed in terms of the percentage of referrals that are deemed appropriate (sensitivity and specificity analyses). Multiple-baseline designs across practices and practitioners studies will be used to test the effectiveness of the referral form in terms of increasing physician referrals for early intervention.

22. Types of TRACE Research Studies • Extant Database Studies • These studies focus on identification of the factors associated with patterns of participation in early intervention and preschool special education programs and factors associated with differences in patterns of program participation. • Process Studies • These studies focus on the examination of the characteristics of effective child find, referral, early identification, and eligibility determination practices. • Outcome Studies • These studies are examining the effectiveness of child find, referral, early identification, and eligibility determination practices used by state and local programs.

23. Process Study Presumptive Eligibility of Early Intervention Program Participants Donald Mott, Carl J. Dunst, and Deborah W. Hamby • Purpose • Determine the extent to which presumptive eligibility was used for eligibility determination in an early intervention program that used a multi-agency review process for enrolling children in Part C early intervention programs. • Sample • The most recent 200 infants and toddlers enrolled in a Part C early intervention program based on: (1) Identified conditions or disabilities, (2) child/family risk factors, and (3) developmental delays (in the absence of identified conditions or risk factors). • Procedure • The number of days between the time the “eligibility determination team” knew the children were eligible and the time the children were enrolled in early intervention were examined according to eligibility category and more than 15 covariates and predictors.

24. Major Findings  Findings showed that children with identified disabilities and those that had at-risk conditions making them eligible for early intervention were generally not made eligible using presumptive eligibility. Failure to use presumptive eligibility was associated with delays in enrollment in early intervention of more than 45 days in almost 75% of children subsequently deemed eligible. Lack of use of presumptive eligibility was the direct result of the multi-agency review process that included unnecessarily complex decision rules for enrolling eligible children.  

25. Number of Days Between Known Eligibility Status and Subsequent Enrollment in Early Intervention Findings from the presumptive eligibility study highlight the fact that sometimes the wrong factors and procedures are used for making eligibility determination decisions.

26. Process Study Case Studies of Pathways to Enrollment in Early Intervention Programs Carol M. Trivette, Carl J. Dunst, Sarah Sexton, Frances Davis, Karen Clark, and Debra Batman • Purpose • Determine the factors that facilitate or impede timely enrollment in early intervention programs. • Sample • Seventeen (17) infants and toddlers with chromosomal disorders, motor delays, developmental delays, and other identifiable disabilities, and children who were medically fragile due to birth-related complications. • Procedure • The paths from birth to enrollment in early intervention were mapped out using information from parents and reviews of child records. • Research Design • Case study of factors that facilitated or delayed referrals to and enrollment in early intervention.

27. Major Findings  The number of missed opportunities between diagnosis and referral to early intervention for these children ranged from 0 to 18. The number of days between diagnosis and referral ranged from 1 to 376. Children with identifiable conditions often were not referred at the time of or shortly after the diagnosis.  

28. Findings showed that the more non-Part C professionals who had contact with a child, the longer it took for a child to be enrolled in early intervention. Referrals made by pediatricians or family physicians to specialists or subspecialists were more likely to place a child on a path that delayed or interfered with a referral to early intervention Relationship between the number of child/family contacts with non-Part C professionals and the number of days for children to be enrolled in early intervention

29. Practice-Based Research Syntheses Characteristics of Academic Detailing as an Outreach to Physician Practice Patricia W. Clow, Carl J. Dunst, and Carol M. Trivette • Definition of the Practice • Brief, repeated, face-to-face, informal educational outreach visits to physicians by knowledgeable and credible professionals (academic detailers) in the physicians’ practice settings to provide information and materials to change prescribing practices and providers’ performance. • Practice Characteristics • Academic detailing is characterized by specific principles and guidelines that have been shown to be factors associated with physician prescribing practices. • Practice Consequences • The consequences constituting the main focus of our research synthesis were physician prescribing practices that were used as a proxy for referrals for “second opinions” and needed services and resources.

30. Academic Detailing Studies Our research synthesis included more than 50 studies published mostly in medical journals. Many studies were randomized-design studies where physicians, practices, or hospitals were assigned to experimental or control conditions, or contrasting interventions (e.g., academic detailing vs. provision of practice guidelines). About one-fourth of the studies included analyses that permitted the identification of the characteristics of the practices that mattered most in terms of observed effects. Standardized effect sizes of between-group and between-characteristics differences were used to isolate the factors accounting for positive study results.

31. Evidence-Based Characteristics of Academic Detailing • Face-to-face, one-to-one interactions • Brief, highly focused provision of information • Provision of concise educational materials • Highlighting and repeating key messages • Use of opinion leaders as academic detailers • Establishing credibility with the targeted audiences • Focusing outreach on targeted audiences using targeted messages • Reinforcing behavior change • REPEATED FOLLOW-UP VISITS

32. Influence of Number of Visits on the Effectiveness of Academic Detailing One-shot educational outreach visits are generally ineffective in sustaining behavior change. Two follow-up visits have significant value-added benefits in terms of affecting behavior change. Ongoing follow-up visits over extended periods of time are most effective in producing desired change.

33. Research by Stephen Soumerai and his colleagues has consistently found that the number of visits by academic detailers is associated with desired changes in physician prescribing practices. The graph shows the relationship between number of visits and decreases in prescribing targeted drugs (Soumerai & Avorn, 1987, Medical Care, 25, 210-221). Relationship between number of outreach visits and decreases in prescribing practices.

34. Findings from a study by May et al. (1999) illustrate the highly significant advantage of repeated educational outreach visits for producing and sustaining desired changes in physician decisions regarding hospital admissions. May et al. (1999), Medical Journal of Australia, 170, 471-474. Hospital admission rates as a function of an ongoing educational outreach over a three-year period of time.

35. Evidence-Based Practice Guide Academic Detailing as an Outreach Practice for Increasing Referrals to Early Intervention and Preschool Special Education Programs Carl J. Dunst, Carol M. Trivette, M’Lisa Shelden, and Dathan Rush • Purpose • Increase the number of referrals to early intervention programs by health-care providers. • Participants • Physicians, nurses, and referral specialists at Level I, II, and III hospitals, specialty clinic health-care providers, and pediatric and family physician practices. • Research Design • Two multiple-baseline designs across practice settings.

36. Research evidence regarding printed materials and educational outreach to physicians (academic detailing) was used to develop an intervention to test the effectiveness of efforts to increase referrals by health care professionals to an early intervention program.

37. Highly focused materials compatible with a medical profession paradigm were developed to highlight the children the early intervention program served and the type of services the program provided to those infants and toddlers.

38. Research evidence on health care provider referral patterns was used to highlight the qualifications of the early intervention program staff. Converging evidence from a number of sources indicates that health care professional referrals to early intervention are more likely to be made to other programs and professionals who have shared paradigms.

39. Health care professionals are more likely to make referrals to other professionals who “possess” backgrounds in disciplines about which the physicians have a “working knowledge” of their services and expertise.

40. Results to Date The academic detailing intervention has had an immediate effect on increasing referrals. The academic detailing visits have provided an opportunity to clarify the purpose and function of early intervention. Repeated visits are a key to maintaining a flow of referrals.