mary beth bruder, ph.d. university of connecticut a.j. pappanikou center for developmental...
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Mary Beth Bruder, Ph.D.
University of Connecticut A.J. Pappanikou Center For Developmental Disabilities
263 Farmington Avenue, MC6222Farmington, CT 06030Phone: (860) 679-1500
Fax: (860) [email protected]
Website: www.uconnucedd.org
Research & Training Center on Service Coordination
CFDA # 84.324L
Center Principles
• Collaborative model of integrated activities.
• Families are an integral component .
• Stakeholders contribute to all phases.
• Use of a Participatory Research Model.
Center FrameworkFamily
I. Status
II. Outcomes
III. Recommended Practices
IV. Measurement
V. Training Model
VI. DisseminationSurveys
Focus Groups
DelphiTechnique
Outcome
Measurem
ent
Validation
Studies
Service Provision
System Administration
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
Objective 1
Describe current models of service coordination.
What we did:We conducted a series of surveys to
describe and define service coordination.
1.1 Part C Survey• Purpose:
To describe current status of Part Cservice coordination models.
• Sample:ALL Part C coordinators in 57 states &territories.
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.
1.2 Curricula Survey• Purpose:
To identify training practices &competencies for service coordinators.
• Sample: Training personnel from 55 statesterritories.
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.
1.3 Parent Leader Survey
• Purpose: To provide descriptions of families’perceptions of their state’s model ofservice coordination.
• Sample:319 parent leaders in 50 states & DC
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 IFSP’s that were responsive to child and family needs.
1.4 Parent ICC Phone Survey
• Purpose:To determine participant’s perceptionsof service coordination models andpractices in their states.
• Sample:Parent leaders in each of 50 states whoserve on ICC boards.
Parent ICC Findings• 60% (n= 30) of ICC parent representatives
considered themselves familiar with federal regulations.
• 64% (n=32) said ICC’s were familiar with federal regulations.
• 48% (n=24) were unsure if state had specific model for service coordination
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)
Outcome Focus Group Design
Four Focal StatesConnecticut, Indiana, North Carolina, Massachusetts
Focused Conversation Workshop Method
Object LevelReflective Level
Interpretive LevelDecisional Level
“If service coordination was of the highest quality for children,
families, and systems how would you know it?”
Set the ContextBrainstormCategorize
Name CategoriesEvaluate the Work
Institute of Cultural Affairs
Outcome Focus GroupsSampling Findings
47 Focus groups consisting of 397 participants in 6 stakeholder
groups
ParentsService Providers
Service CoordinatorsProgram Administrators
PhysiciansChildcare Providers
250 outcomes of high quality service coordination
Used to develop the Delphi survey instruments
Delphi Sampling
Program Admin.
ServiceProvider(Indiana)
ServiceCoord.
Childcare Provider
Family Physician
86 22 144 54 80 9
Total of 395 surveys were distributed
Outcome Delphi DesignDelphi Surveys
N=395 in 2 roundsRound I1. 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.
Outcome Delphi DesignRound 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
Delphi Outcomes1. 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
National Outcomes Survey
Parent/Practitioner Surveys
Parent/Practitioner DesignParent Practitioner Findings
Identified outcomes of:
-Natural Environments
-Service Coordination
-Early Intervention
Parent PractitionerSampling 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 asprimarily desired benefits of service
coordination -System Coordination -Information and referral -Family support and resources -Family-centered practices -Teaming
Two outcomes were valuedOutcomes of all three services:
-Family satisfaction -Improved quality of life
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)
Practice Focus Group Design
Four Focal StatesConnecticut, Indiana, North Carolina, Massachusetts
Large and Small Group ActivitiesIntroduction to Service CoordinationDiscussion of the tool kit available to Service CoordinatorsDiscussion 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
Practice Focus Groups
Sampling Findings
39 Focus groups consisting of participants in 4 stakeholder groups
Parents Service Providers
Service CoordinatorsProgram Administrators
2000+ practices that lead to outcomes of high quality
service coordination
Used to develop the Delphi survey instruments
Delphi Practice Sampling
112 PTIs distributed to 12 families each
2688 surveys distributed to families
Total of 4730 surveys were distributed nationally
Part C Coordinators50 states + 3 territories
106 total surveys
Program Administrators8 per state
848 total surveys
Service Coordinators8 per state
848 total surveys
Service Providers8 per state
240 total surveys
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.
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.
Delphi Practice Themes1. 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
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
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 informationEnsure family understanding & satisfactionHelp families obtain informal and formal supportsCommunication among team membersCollaborate with community organizations
Grouped practice categories with Dunst’s national survey
Categories
Help giving
Collaboration
Administration
Categories
Instrumental: Providing informationEnsuring understandingFormal 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
Child Eligible for Part C
Child’s 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
Children’s 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
Service Coordinator ToolKit
Embedded Within Each Activity:
Outcomes
Practice Themes: Specific Tasks
Tips, Resources, Documents, Videos
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
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 child’s care. Families must have up-to-date information on their child’s health status to fully participate in their child’s care. Early interventionists and other providers need health and medical information so they can learn how a child’s 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, children’s 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
Service Coordinator ToolKitActivity: Coordinating with Medical and Health Providers
During a conversation with the family, gather and provideinformation about their awareness and knowledge about:
Child’s involvement with medical and health care providers
Child’s history of hospitalizations
Concept of a medical home
Child’s nutritional needs
Child’s mental health need
Child’s environment and potential hazards
Confidentiality & sharing of information
Medical insurance
An ongoing medical/health record system
Help Giving
Collaboration
Overview
Administration
Evaluation
Service Coordinator ToolKitActivity: Coordinating with Medical and Health Providers
Tips
Resources
Videos
Forms
Educate service providers about child’s medical needs
Facilitate the appropriate sharing of medical information among the child’s 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 ToolKitActivity: Coordinating with Medical and Health Providers
Tips
Resources
Videos
Forms
Obtain written consent from family to gather health and medical records
Request child’s 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 ToolKitActivity: Coordinating with Medical and Health Providers
Help Giving
Collaboration
Overview
Administration
Evaluation
Tips
Resources
Videos
Forms
• Feedback From Family:Disagree Somewhat Agree Strongly Agree
1. My child receives care within a medical home2. I feel my child’s medical and health needs are
met3. My child has the health insurance he or she
needs4. My family’s confidential information is kept
private5. My service coordinator is adequately
coordinating my child’s medical and health services
6. I have the support, knowledge and tools to coordinate the medical and health services for my child
Service Coordinator ToolKitActivity: Coordinating with Medical and Health Providers
Help Giving
Collaboration
Overview
Administration
Evaluation
Tips
Resources
Videos
Forms
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
For More Information
•UCEDD Web Site:
http://www.uconnucedd.org/Data ReportsNewslettersProject Updates
•Articles
•Trainings