1. Mary Beth Bruder, Ph.D. University of Connecticut A.J. Pappanikou Center For Developmental Disabilities 263 Farmington Avenue, MC6222 Farmington, CT 06030 Phone: (860) 679-1500 Fax: (860) 679-1571 bruder@nso1.uchc.edu Website: www.uconnucedd.org Research & Training Center on Service Coordination CFDA # 84.324L

2. Center Principles Collaborative model of integrated activities. Families are an integral component. Stakeholders contribute to all phases. Use of a Participatory Research Model.

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

4. IDEA Outlines Service Coordination Activities Coordinating the Performance of Evaluations and Assessments Facilitating and Participating in the Development, Review, & Evaluation of the IFSP Assisting the Family in Identifying Available Service Providers Coordinating and Monitoring the Delivery of Available Services Informing Families of Available Advocacy Services Coordinating with Medical & Health Providers Facilitating the Development of a Transition Plan

5. Objective 1 Describe current models of service coordination. What we did: We conducted a series of surveys to describe and define service coordination.

6. 1.1 Part C Survey Purpose: To describe current status of Part C service coordination models. Sample: ALL Part C coordinators in 57 states & territories.

7. Part C Survey Findings 39 Part C coordinators reported lack of uniformity in how service coordination was provided in their state. 36 states used regional approach. Service coordinator case loads: –Ranged from 9 – 70 with mean = 38. 17 states were changing service coordination models.

8. 1.2 Curricula Survey Purpose: To identify training practices & competencies for service coordinators. Sample: Training personnel from 55 states territories.

9. Curricula Survey Findings Information was obtained from 55 states & territories. Average length of training in 37 states: 2 –3 days. 49% (n= 27) states mandated service coordination training. 47% (n=26) states were in process of developing service coordination curricula.

10. 1.3 Parent Leader Survey Purpose: To provide descriptions of families perceptions of their states model of service coordination. Sample: 319 parent leaders in 50 states & DC

11. Parent Leader Findings 26% (n=83) of families did not learn who their service coordinator was until after the IFSP. 36% (n=118) of families felt service coordination was very helpful. 38% (n=121) of parents believed service coordination was very effective in developing IFSPs that were responsive to child and family needs.

12. 1.4 Parent ICC Phone Survey Purpose: To determine participants perceptions of service coordination models and practices in their states. Sample: Parent leaders in each of 50 states who serve on ICC boards.

13. Parent ICC Findings 60% (n= 30) of ICC parent representatives considered themselves familiar with federal regulations. 64% (n=32) said ICCs were familiar with federal regulations. 48% (n=24) were unsure if state had specific model for service coordination

14. 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)

15. 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

16. 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

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

18. 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.

19. 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

20. Delphi Outcomes 1.Children and families receive appropriate supports and services that meet their individual needs 2.Children are healthy 3.Childrens 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

21. 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

22. 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)

23. 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

24. 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

25. 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

26. 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.

27. 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.

28. 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

29. 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 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 National Family Sampling: 358 parents of children with disabilities in 45 states

30. Development of Practice Categories Developed practice themes out of interview and Delphi data Reduced and collapsed themes into 12 interview practice themes and 12 Delphi practice themes Eliminated practice themes that are the same as service coordinator activities by federal law. Eliminated practice themes that are directly related to service coordinators who also provide direct service. Combined into 6 categories: Administrative Provide information Ensure family understanding & satisfaction Help families obtain informal and formal supports Communication among team members Collaborate with community organizations Grouped practice categories with Dunsts national survey Categories Help giving Collaboration Administration Categories

31. Instrumental: Providing information Ensuring understanding Formal and informal supports Relational: Providing support and encouragement Help giving Collaboration Administration Categories Communication among team members Collaborating with community organizations Administrative duties Professional development Development of Practice Categories

32. Child Eligible for Part C Childs Family Child and Family Characteristics - ethnicity, culture and primary language of family - age of child and others in family -developmental needs of child -support needs of family -SES of family -family/child enrollment in programs -location Inputs State Policies and Infrastructure -context -values -lead agency -funding -training -case loads -service delivery options Service Coordinator -values - background - training -years experience -skills Community Resources, Services and Supports -rural, suburban, urban -early childhood programs -early childhood learning opportunities -family support mechanisms -family /child services - financial infrastructure Outputs Service Coordination Model -type -finance of -case loads -personnel standards Local Collaborations -structures -personnel types -team models -relationships Short Term Children and families participate in supports and services that are coordinated, effective and individualized to their needs Long Term Families acquire and/or maintain a quality of life to enhance their well being Families meet the special needs of their child Childrens health and development is enhanced Children and families receive quality service Families have access to support, information and education to address their individual needs Families make informed decisions about services, resources and opportunities for their child Agencies and professionals are coordinated Families are able to communicate the needs of their child Service Coordinator Activities - coordinate evaluations and assessments - IFSP -assist family to choose service providers -coordinate and monitor services -inform families about advocacy -coordinate medical and health services -transition Service Coordinator Practices -help-giving - relational - participatory - collaborations - with team members - with community organizations - administration - tasks - professional development Intermediate OutcomesActivities

33. Service Coordinator ToolKit Embedded Within Each Activity: Outcomes Practice Themes: Specific Tasks Tips, Resources, Documents, Videos

34. Specific Outcomes for Coordinating Medical & Health Children and families receive quality services Agencies and professionals are coordinated Children and families receive appropriate supports and service that are coordinated, effective, and individualized to their needs Children's health and development are enhanced

35. Coordinating with Medical and Health Providers Coordinating with medical and health providers is a key and required component of what service coordinators do. As the single point of contact, service coordinators can help families access the medical and health providers they need, ensure that each child has a medical home, and coordinate those services with the early intervention resources and supports. Coordinating with medical and health providers is important for two other reasons. First, it ensures that information flows among everyone involved in the childs care. Families must have up-to-date information on their childs health status to fully participate in their childs care. Early interventionists and other providers need health and medical information so they can learn how a childs health status impacts overall development, and specifically how it impacts their work with the child. And finally, medical and health providers need to learn about the evaluations and services a child receives; without this information the provider is unable to be a medical home. The second reason for coordinating with medical and health providers is to prevent resources and supports from becoming fragmented from one another. Many children who receive early intervention support have more than one medical and health provider. With multiple providers, care can easily become fragmented. Through coordination and ensuring each and every child has a medical home, service coordinators help in the following ways: and it is common for providers to not communicate or send reports to each other. The Research and Training Center identified two key outcomes associated with successfully accomplishing this activity. First, agencies and professionals coordinate the care and services they provide to the child and family. Second, childrens health and development is enhanced. The immediate outcomes or benefits of implementing this activity successfully are: 1.Family and professionals share pertinent information with one another, and keep the lines of communication open. 2.Family receives services and care that are coordinated with one another 3.Family expresses satisfaction with the level and coordination of care and services. Help Giving Collaboration Administration Evaluation Service Coordinator ToolKit Activity: Coordinating with Medical and Health Providers

36. During a conversation with the family, gather and provide information about their awareness and knowledge about: Childs involvement with medical and health care providers Childs history of hospitalizations Concept of a medical home Childs nutritional needs Childs mental health need Childs environment and potential hazards Confidentiality & sharing of information Medical insurance An ongoing medical/health record system Help Giving Collaboration Overview Administration Evaluation Service Coordinator ToolKit Activity: Coordinating with Medical and Health Providers Tips Resources Videos Forms

37. Educate service providers about childs medical needs Facilitate the appropriate sharing of medical information among the childs service providers (early intervention as well as health care) Identify and obtain additional medical/health services that may be needed for the child Help Giving Collaboration Overview Administration Evaluation Service Coordinator ToolKit Activity: Coordinating with Medical and Health Providers Tips Resources Videos Forms

38. Obtain written consent from family to gather health and medical records Request childs health and medical records from the appropriate sources Obtain written consents from family to share information Provide health and medical providers with EI evaluations and progress notes Service Coordinator ToolKit Activity: Coordinating with Medical and Health Providers Help Giving Collaboration Overview Administration Evaluation Tips Resources Videos Forms

39. Feedback From Family: Disagree Somewhat AgreeStrongly Agree 1.My child receives care within a medical home 2.I feel my childs medical and health needs are met 3.My child has the health insurance he or she needs 4.My familys confidential information is kept private 5.My service coordinator is adequately coordinating my childs medical and health services 6.I have the support, knowledge and tools to coordinate the medical and health services for my child Service Coordinator ToolKit Activity: Coordinating with Medical and Health Providers Help Giving Collaboration Overview Administration Evaluation Tips Resources Videos Forms

40. Next Steps Experimental study –Control and Intervention groups of service coordinators –Pre and post assessment of families and child development –Intervention Group: Receives initial training on RTC model Web-based SC Tool Kits Professional Learning Communities Six-month intervention phase

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