Mary Beth Bruder, Ph.D.

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Research Training Center on Service
CoordinationCFDA 84.324L

• Mary Beth Bruder, Ph.D.
• University of Connecticut
• A.J. Pappanikou Center For Developmental
  Disabilities
• 263 Farmington Avenue, MC6222Farmington, CT
  06030
• Phone [phone]Fax (860)
  679-1571bruder_at_nso1.uchc.edu
• Website www.uconnucedd.org

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Center Principles

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

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

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Objective 1Describe current models of service
coordination.

• What we did
• We conducted a series of surveys to describe and
  define service coordination.

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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.

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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.

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1.2 Curricula Survey

• Purpose
• To identify training practices
• competencies for service coordinators.
• Sample
• Training personnel from 55 states
• territories.

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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 (n26) states were in process of developing
  service coordination curricula.

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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

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Parent Leader Findings

• 26 (n83) of families did not learn who their
  service coordinator was until after the IFSP.
• 36 (n118) of families felt service coordination
  was very helpful.
• 38 (n121) of parents believed service
  coordination was very effective in developing
  IFSPs that were responsive to child and family
  needs.

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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.

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Parent ICC Findings

• 60 (n 30) of ICC parent representatives
  considered themselves familiar with federal
  regulations.
• 64 (n32) said ICCs were familiar with federal
  regulations.
• 48 (n24) were unsure if state had specific
  model for service coordination

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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)
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Outcome Focus Group Design
Four Focal States Connecticut, Indiana, North Carolina, Massachusetts
Focused Conversation Workshop 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
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Outcome Focus Groups
Sampling Findings
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
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Delphi Sampling
Program Admin. Service Provider (Indiana) Service Coord. Childcare Provider Family Physician
86 22 144 54 80 9
Total of 395 surveys were distributed
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Outcome Delphi Design
Delphi Surveys N395 in 2 rounds Round I Outcome lists for each stakeholder group coded by state and stakeholder group. Outcomes across stakeholders within states sent to focus group participants in each of 4 states. 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 gt55 rated as extremely desirable. 250 Outcomes reduced to 75.
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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 gt75 rated as extremely desirable Independent raters eliminated redundant items Yielded 10 outcomes Reduced to 7
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Delphi Outcomes

• Children and families receive appropriate
  supports and services that meet their individual
  needs
• Children are healthy
• Childrens development is enhanced
• Children have successful transitions
• Families are involved in decision making
• Families are informed about resources and
  services
• People work together as a team

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National Outcomes SurveyParent/Practitioner
Surveys
Parent/Practitioner Design Parent 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
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Objective 3WHAT WE DIDWe determined practices
that lead to high quality Service
CoordinationHOW WE DID ITFocus Groups, Delphi
Surveys, National Surveys, (Family and Service
Coordinator Interviews and IFSP Review)
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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
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Practice Focus Groups
Sampling Findings
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
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Delphi Practice Sampling
112 PTIs distributed to 12 families each 2688
surveys distributed to families
Total of 4730 surveys were distributed
nationally
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Practice Delphi Design and Findings
Delphi I Design Practice lists for each stakeholder group coded by state and stakeholder group. Included practices and outcome statements from both sets of focus groups. Match practices to outcomes on their stakeholder survey. Delphi I Findings Frequencies of practices calculated for each outcome statement. Development of National Delphi Survey.
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Practice Delphi Design and Findings
Delphi II Design List of practices that support each of the outcome statements. 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 gt85 rated as agreed or strongly agreed. Yielded 142 practices. Coded into 12 themes.
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Delphi Practice Themes

• Providing information
• Ensuring family understanding
• Being responsive to families
• Developing IFSPs
• Monitoring progress
• Ensuring family satisfaction
• Promoting child development
• Addressing healthcare and safety issues
• Completing administrative responsibilities
• Planning for transitions
• Collaborating with community organizations
• Engaging in professional development activities

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National Practices SurveyFamily 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 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
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Development of Practice Categories
Categories
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
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Development of Practice Categories
Instrumental Providing information Ensuring
understanding Formal and informal
supports Relational Providing support and
encouragement
Communication among team members Collaborating
with community organizations
Administrative duties Professional development
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Outcomes
Activities
Inputs
Outputs
Short Term
Long Term
Intermediate

• State Policies and Infrastructure
• - context
• values
• lead agency
• funding
• training
• case loads
• - service delivery options

• Service Coordination Model
• type
• finance of
• case loads
• - personnel standards

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

Families acquire and/or maintain a quality of
life to enhance their well being
Families make informed decisions about services,
resources and opportunities for their child
Child Eligible for Part C Childs Family

• Local Collaborations
• structures
• personnel types
• team models
• relationships

• Community Resources, Services and Supports
• rural, suburban, urban
• early childhood programs
• early childhood learning opportunities
• family support mechanisms
• family /child services
• - financial infrastructure

Children and families participate in supports
and services that are coordinated, effective and
individualized to their needs
Families meet the special needs of their child
Agencies and professionals are coordinated
Service Coordinator Practices -help-giving -
relational - participatory - collaborations -
with team members - with community
organizations - administration - tasks -
professional development

• 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

Families have access to support, information and
education to address their individual needs
Childrens health and development is enhanced

• Service Coordinator
• - values
• - background
• - training
• years experience
• skills

Children and families receive quality service
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Service Coordinator ToolKit

• Embedded Within Each Activity
• Outcomes
• Practice Themes Specific Tasks
• Tips, Resources, Documents, Videos

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Specific Outcomes for Coordinating Medical
Health
Children and families receive appropriate
supports and service that are coordinated,
effective, and individualized to their needs
Children's health and development are enhanced
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Service Coordinator ToolKit Activity
Coordinating with Medical and Health Providers

• 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
• Family and professionals share pertinent
  information with one another, and keep the lines
  of communication open.
• Family receives services and care that are
  coordinated with one another
• Family expresses satisfaction with the level and
  coordination of care and services.

Help Giving
Collaboration
Administration
Evaluation
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Service Coordinator ToolKit Activity
Coordinating with Medical and Health Providers

• 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

Tips
Overview
Help Giving
Resources
Collaboration
Videos
Administration
Forms
Evaluation
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Service Coordinator ToolKit Activity
Coordinating with Medical and Health Providers

• 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

Tips
Overview
Help Giving
Resources
Collaboration
Videos
Administration
Forms
Evaluation
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Service Coordinator ToolKit Activity
Coordinating with Medical and Health Providers

• 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

Tips
Overview
Help Giving
Resources
Collaboration
Videos
Administration
Forms
Evaluation
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Service Coordinator ToolKit Activity
Coordinating with Medical and Health Providers

• Feedback From Family
• Disagree Somewhat Agree Strongly Agree
• My child receives care within a medical home
• I feel my childs medical and health needs are
  met
• My child has the health insurance he or she needs
• My familys confidential information is kept
  private
• My service coordinator is adequately coordinating
  my childs medical and health services
• I have the support, knowledge and tools to
  coordinate the medical and health services for my
  child

Tips
Overview
Help Giving
Resources
Collaboration
Videos
Administration
Forms
Evaluation
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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

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For More Information

• UCEDD Web Site
• http//www.uconnucedd.org/
• Data Reports
• Newsletters
• Project Updates
• Articles
• Trainings