1. Service Coordination: Are We There Yet? Gloria Harbin, Ph.D. Kathleen Whitbread, Ph.D. University of Connecticut A.J. Pappanikou Center For Developmental Disabilities 263 Farmington Avenue, MC6222 Farmington, CT 06030 USA Phone: (860) 679-1500 Fax: (860) 679-1571 whitbread@nso1.uchc.edu whitbread@nso1.uchc.edu Website: www.uconnucedd.org Research & Training Center in Service Coordination CFDA # 84.324L

2. This is a Collaborative Project Four primary sites: Mary Beth Bruder, Ph.D., University of Connecticut Gloria Harbin, Ph.D., University of North Carolina-Chapel Hill Michael Conn-Powers, Indiana University Sara Miranda, Federation for Children with Special Needs, Massachusetts Additional research being conducted by: Richard Roberts, Ph.D., Utah State University Carl Dunst, Ph.D., Orelena Hawks Puckett Institute

3. Principles Collaborative model of integrated activities. Families are an integral component of our project. Stakeholders contribute to all phases of the center activities. Use of a Participatory Research Model.

4. Center Framework Family Service Provision System Administration Status Outcomes Recommended Practices Measurement Training Model Dissemination SurveysFocus Groups Delphi Technique Outcome Measurement Validation Studies I. II. III. IV. V. VI.

5. Objective 1 HOW WE DID IT: Described current models of service coordination WHAT WE DID: Series of Surveys

6. Survey Design Part C Survey Examine current models of SC Roles of Parents SC Policy Monitoring and evaluation SC Financing 49 closed-ended questions Mail, e-mail, faxes Curricula Survey Status of Part C SC training -models -curricula -follow-up 5 open-ended questions Telephone interview, emails, faxes Parent Leader Survey Explore families’ perceptions of their statewide system of SC. -system entry -evaluation & IFSP -service Provision -transition -training -collaboration 29 closed-ended items 22 open-ended items for short responses Mail Parent ICC Survey Understanding of Federal regulations to SC. Models of SC Degree ICC addressed SC Outcomes of quality SC 23 closed and open- ended questions Telephone interviews

7. Survey Sampling Part C Survey All Part C Coordinators in 57 States and Territories Curricula Survey Training Personnel from 55 States and Territories Parent Leader Survey 319 Parent Leaders in 50 States and DC Parent ICC Survey Parent Leaders in each of 50 States who serve on ICC boards

8. Survey Findings Part C Survey N=57 39 Part C Coordinators reported lack of uniformity in provision of service coordination 36 states used a regional approach Service Coordinator caseloads ranged from 9-70 with a mean of 38 17 states were changing service coordination models Curricula Survey N=55 Average length of training in 37 states = 2-3 days 27 states mandated service coordination training 26 states were in the process of developing service coordination training Parent Leader Survey N=319 83 families did not learn who their service coordinator was until after the IFSP 80 noted SC is ineffective in locating advocacy services 121 parents believed service coordination was very effective in developing IFSPs that were responsive to child and family needs Parent ICC Survey N=50 30 ICC parent representatives considered themselves familiar with federal regulations 32 parent representatives said their ICCs were familiar with federal regulations 24 were unsure if the state had specific service coordination models

9. System Infrastructure: WHAT IS NEEDED TO SUPPORT EFFECTIVE SERVICE COORDINATION

10. Case Study States Dedicated and Independent Blended with Intervention – LA Blended with Intervention – IA

11. What Approaches are Used? Dedicated - and Independent Dedicated - NOT Independent Blended with Intervention Lead Agency (LA) Blended with Intervention Interagency (IA) Variable (Harbin, Bruder, Reynolds, Mazzarella, Gabbard, & Staff, 2002.)

12. Which Model is Best? FINDINGS: Differences in nature of some system components SYSTEM INFRASTRUCTURE SERVICE COORDINATION PRACTICES CHILD AND FAMILY OUTCOMES

13. Which Model is Best? Not a useful question Multiple factors – not just the model were associated with positive outcomes

14. Approaches and their Assumptions ANALYSIS REVEALED Assumptions not always realized Multiple factors could influence whether the original assumptions were realized

15. Dedicated Approach ASSUMPTIONS Can spend more time on S.C. Specialist Needed Offer Broader Array More Choice for Families

16. Dedicated Approach WHAT CAN GO WRONG? Case load Too large S.C. not knowledgeable about services and resources Parents uninformed S.C. not knowledgeable about disabilities

17. Blended Approach ASSUMPTIONS Most knowledgeable about child and family needs More effectively communicate with other providers Family more likely to reveal needs

18. Blended Approach WHAT CAN GO WRONG? Knowledge of needs related to own expertise Communication doesn’t occur (no time, no mechanism) Service provider doesn’t elicit needs

19. Variable Approach ASSUMPTIONS No model is best Locals know best Individualization of approach is more likely to meet needs

20. Variable Approach WHAT CAN GO WRONG? Pragmatic decision, not data-based What locals “think is best” may not be Lack of consistency confuses parents

21. Influential Factors Empowering Relationship Case Load Use of Family Support Approach Parent Choice Array of Resources Breadth of Service System Interagency Linkages

22. Influential Factors Integration of Services Transdisciplinary Routines-Based Integrated Therapies IFSPs With All Needs and Services Interagency Training Mechanisms to link needs to resources

23. Influential Factors Learning Opportunities in Natural Settings Identification of New Needs Frequency of Contact Case Load Interagency Linkages

24. Influential Factors Knowledgeable Personnel Diverse disabilities and conditions Resources Capacity building

25. Objective 2 WHAT WE DID: We determined outcomes attributed to effective service coordination across stakeholders HOW WE DID IT: Focus Groups, Delphi Surveys, National Surveys, (Family and Service Coordinator Interviews and IFSP Review)

26. Outcome Focus Group Design Four Focal States Connecticut, Indiana, North Carolina, Massachusetts Focused ConversationWorkshop Method Object Level Reflective Level Interpretive Level Decisional Level “If service coordination was of the highest quality for children, families, and systems how would you know it?” Set the Context Brainstorm Categorize Name Categories Evaluate the Work Institute of Cultural Affairs

27. Outcome Focus Groups SamplingFindings 47 Focus groups consisting of 397 participants in 6 stakeholder groups Parents Service Providers Service Coordinators Program Administrators Physicians Childcare Providers 250 outcomes of high quality service coordination Used to develop the Delphi survey instruments

28. Delphi Sampling Program Admin. Service Provider (Indiana) Service Coord. Childcare Provider FamilyPhysician 862214454809 Total of 395 surveys were distributed

29. Outcome Delphi Design Delphi Surveys N=395 in 2 rounds Round I 1.Outcome lists for each stakeholder group coded by state and stakeholder group. 2.Outcomes across stakeholders within states sent to focus group participants in each of 4 states. 3.Participants asked to rate Outcomes on a 5 point scale: “not at all desirable”, “a little desirable”, “somewhat desirable”, “very desirable” and “strongly desirable”. Round I Findings Retained outcomes that >55% rated as “extremely desirable”. 250 Outcomes reduced to 75.

30. Outcome Delphi Design Round II Same stakeholders sent list of Outcomes generated by their stakeholder group across states (e.g. all parents, all service coordinators) Same five-point scale as Round I Round II Findings Retained outcomes that >75% rated as “extremely desirable” Independent raters eliminated redundant items Yielded 10 outcomes Reduced to 7

31. Delphi Outcomes 1. Children and families receive appropriate supports and services that meet their individual needs 2. Children are healthy 3. Children’s development is enhanced 4. Children have successful transitions 5. Families are involved in decision making 6. Families are informed about resources and services 7. People work together as a team

32. National Outcomes Survey Parent/Practitioner Surveys Parent/Practitioner DesignParent Practitioner Findings Identified outcomes of: -Natural Environments -Service Coordination -Early Intervention Parent Practitioner Sampling 879 EI program practitioners and directors and parents of children with disabilities in 48 states -519 Program practitioners and directors -360 Parents Five Outcomes were identified as primarily desired benefits of service coordination -System Coordination -Information and referral -Family support and resources -Family-centered practices -Teaming Two outcomes were valued Outcomes of all three services: -Family satisfaction -Improved quality of life

33. Objective 3 WHAT WE DID: We determined practices that lead to high quality Service Coordination HOW WE DID IT: Focus Groups, Delphi Surveys, National Surveys, (Family and Service Coordinator Interviews and IFSP Review)

34. Practice Focus Group Design Four Focal States Connecticut, Indiana, North Carolina, Massachusetts Large and Small Group Activities Introduction to Service Coordination Discussion of the tool kit available to Service Coordinators Discussion of practices that would lead to quality service coordination Facilitation Guide “What do service coordinators have to do in order to reach the best outcomes for children and families?” Workshop Method

35. Practice Focus Groups SamplingFindings 39 Focus groups consisting of participants in 4 stakeholder groups Parents Service Providers Service Coordinators Program Administrators 2000+ practices that lead to outcomes of high quality service coordination Used to develop the Delphi survey instruments

36. Delphi Practice Sampling 112 PTIs distributed to 12 families each 2688 surveys distributed to families Total of 4730 surveys were distributed nationally Part C Coordinators 50 states + 3 territories 106 total surveys Program Administrators 8 per state 848 total surveys Service Coordinators 8 per state 848 total surveys Service Providers 8 per state 240 total surveys

37. Practice Delphi Design and Findings Delphi I Design 1.Practice lists for each stakeholder group coded by state and stakeholder group. 2.Included practices and outcome statements from both sets of focus groups. 3.Match practices to outcomes on their stakeholder survey. Delphi I Findings Frequencies of practices calculated for each outcome statement. Development of National Delphi Survey.

38. Practice Delphi Design and Findings Delphi II Design 1.List of practices that support each of the outcome statements. 2.National sample of stakeholders (Part C Coordinators, Program Administrators, Service Coordinators, Service Providers, Families) completed two practice surveys. Delphi II Findings Practices that lead to the outcomes. Retained practices that >85% rated as “agreed” or “strongly agreed”. Yielded 142 practices. Coded into 12 themes.

39. Delphi Practice Themes 1. Providing information 2. Ensuring family understanding 3. Being responsive to families 4. Developing IFSPs 5. Monitoring progress 6. Ensuring family satisfaction 7. Promoting child development 8. Addressing healthcare and safety issues 9. Completing administrative responsibilities 10. Planning for transitions 11. Collaborating with community organizations 12. Engaging in professional development activities

40. National Practices Survey Family Surveys Family Survey Design: Identified Experiences with: Early Intervention Natural Environment Service Coordination Family Survey Findings: Little or no attention is paid to non-EI services provided by EI programs Transition planning is not reported frequently by families. National Family Sampling: 358 parents of children with disabilities in 45 states SCs engage in discussion of EI services but engage in considerable less action oriented practices. Very little attention is paid to child development and learning.

41. Objective 4 HOW WE DID IT: Measured outcomes and practices of effective Service Coordination WHAT WE DID: Interviews with families, families’ service coordinators and IFSP review

42. Interview Design Four Focal States Connecticut, Indiana, North Carolina, Massachusetts Additional States Arizona, Utah, Washington State Interview Protocol Semi-structured questions Probes Interview Form

43. Interview Sampling Connecticut, Indiana, North Carolina, Massachusetts IFSPs N=80 Families N=80 Service Coordinators N=80 Ethnicity Child’s age Child’s level of functioning Family location Socio economic status Full or Part-time employment Caseloads Years experience Amount of training

44. Interview Sampling Washington, Arizona, Utah IFSPs N=30 Families N=30 Service Coordinators N=30 Ethnicity Child’s age Child’s level of functioning Family location Socio economic status ESL Maternal age less than 17 TANF Title V TANF & Title V Full or Part-time employment Caseloads Years experience Amount of training

45. Family Demographics LocationFrequencyPercent Urban3737.8 Suburban3636.7 Rural2525.5 EthnicityFrequencyPercent Black2222.4 White4950.0 Latino1313.3 Other1414.3 (N=98)

46. Family Demographics IncomeFrequencyPercent Low3939.8 Not low5960.2 Child’s AgeFrequencyPercent 0-12424.5 1-23232.7 2-34242.8 NeedsFrequencyPercent Mild4444.9 Moderate3131.6 Complex2323.5

47. Service Coordinator Demographics EmploymentFrequencyPercent Part time2836.8 Full time4863.2 Experience (years)FrequencyPercent 0-11215.8 1.1-53647.4 5.1-102127.6 10.1-1545.3 15.1-2022.6 20.1+11.3 (N=76)

48. Interview Findings Identified outcomes important to families. Identified who assisted the family in achieving the outcomes. Learned how service coordination helped achieve the outcomes. Identified how long it took to achieve the outcome.

49. Outcome Methodology Independent sort of family and SC outcomes into themed categories. Collapsed similar themes resulting in 14 family and 13 SC outcome themes. Frequencies and percentages were calculated for each. Second sort of outcomes into themed categories. Frequencies and percentages were calculated for each. Comparison of interview, Delphi, and survey outcomes yielding final 8 outcomes.

50. Interview Outcomes Children will have successful transitions. Children and Families receive early intervention services that are individualized, coordinated and effective. Families make informed decisions about services and opportunities in the community for their children with a disability. Families acquire and/or maintain a quality of life that enhances their well-being. Families are self-sufficient. Families are knowledgeable of their child’s disability. Families are satisfied. Children’s development is enhanced. Children are safe and healthy.

51. Interview Outcomes FAMILYCHILDSYSTEM Families are knowledgeable of their child’s unique needs Children are safe and healthyChildren and families receive quality early intervention services that are coordinated, effective and individualized to their needs Families have tools, knowledge and supports to access resources to address their individual needs Children’s development is enhancedTransitions are successful Families acquire and/or maintain a quality of life that enhances their well-being Families make informed decisions about services and opportunities in the community for their children

52. Interview Outcomes: Families vs. Service Coordinators Family Interviews: 98 Service Coordinators Interviews: 98

53. “ Who helped make this happen?” Family Interviews: 98 Service Coordinators Interviews: 98

54. Practice Methodology Independent sort of family and SC practices into themed categories. Collapsed similar themes resulting in 15 family practice themes and 14 SC practice themes. Frequencies and percentages were calculated for each. Consensus coding and reliability checks were conducted during the second sort. Themed categories were compared to practice themes from the Delphi study and reduced to 12 interview practice themes.

55. Interview Practice Themes 1. Providing families with information 2. Assisting families with obtaining formal and informal supports 3. Coordinating services 4. Monitoring the provision of services 5. Providing support and encouragement 6. Giving suggestions to enhance child development 7.Completing administrative duties 8. Providing direct service to child 9. Facilitating transition process 10. Facilitating communication among team members 11. Developing and reviewing IFSPs 12. Ensuring family understanding of child development

56. Interview Practices: Families vs. Service Coordinators

57. IFSP Methodology 98 IFSP’s were available 68% of IFSP’s had missing data IFSP’s were reviewed for -Number of agencies involved, -Team members -Types of services -Location of services -Outcomes

58. IFSP Data Graph – Agencies used Number of Agencies Number of Families 2 0 10 16 8 62

59. IFSP Data Graph – Location of service Percentage 8.9%2.32%3.86%7.34% 67.57% 0.77%9.65%

60. Convergence of Data Sources LOGIC MODEL

61. State Strategic Planning RTC Colorado Ohio North Carolina Florida

62. Strategic Planning Process Vision Mission Objectives Resources Action Plan Evaluation Plan

63. For More Information UCEDD Web Site: http://www.uconnced.org/ Data Reports Newsletters Project Updates Articles Trainings