Transcript Research & Training Center in Service Coordination CFDA

Research & Training Center
on Service Coordination
CFDA # 84.324L
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
[email protected]
Website: www.uconnucedd.org
Center Principles
• Collaborative model of integrated
activities.
• Families are an integral component
.
• Stakeholders contribute to all
phases.
• Use of a Participatory Research
Model.
Center Framework
Family
Service Provision
System Administration
I. Status
II. Outcomes
III. Recommended
Practices
IV. Measurement
V. Training Model
VI. Dissemination
IDEA Outlines
Service Coordination Activities
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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 C
service 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
1.2 Curricula Survey
• Purpose:
To identify training practices &
competencies for service coordinators.
• Sample:
Training personnel from 55 states
territories.
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.
1.3 Parent Leader Survey
• Purpose:
To provide descriptions of families’
perceptions of their state’s model of
service 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
1.4 Parent ICC Phone Survey
• Purpose:
To determine participant’s perceptions
of service coordination models and
practices in their states.
• Sample:
Parent leaders in each of 50 states who
serve 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 States
Connecticut, Indiana, North Carolina, Massachusetts
Focused Conversation
Workshop Method
Object Level
Reflective Level
Interpretive Level
Decisional Level
Set the Context
Brainstorm
Categorize
Name Categories
Evaluate the Work
“If service coordination was of
the highest quality for children,
families, and systems how would
you know it?”
Institute of Cultural Affairs
Outcome Focus Groups
Sampling
Findings
47 Focus groups consisting of
397 participants in 6
stakeholder groups
250 outcomes of high quality
service coordination
Parents
Service Providers
Service Coordinators
Program Administrators
Physicians
Childcare Providers
Used to develop the Delphi
survey instruments
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
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.
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
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
National Outcomes
Survey
Parent/Practitioner Surveys
Parent/Practitioner Design
Parent Practitioner Findings
Identified outcomes of:
Parent Practitioner
Sampling
Five Outcomes were identified as
primarily desired benefits of service
coordination
-System Coordination
-Information and referral
-Family support and resources
-Family-centered practices
-Teaming
879 EI program practitioners and
directors and parents of children with
disabilities in 48 states
Two outcomes were valued
Outcomes of all three services:
-Natural Environments
-Service Coordination
-Early Intervention
-519 Program practitioners
and directors
-360 Parents
-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 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
Practice Focus Groups
Sampling
Findings
39 Focus groups consisting
of participants in 4
stakeholder groups
2000+ practices that lead
to outcomes of high quality
service coordination
Parents
Service Providers
Service Coordinators
Program Administrators
Used to develop the Delphi
survey instruments
Delphi Practice Sampling
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
112 PTIs distributed to 12 families each
2688 surveys distributed to families
Total of 4730 surveys were
distributed nationally
Practice Delphi Design
and Findings
Delphi I Design
1.
2.
3.
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
•
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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
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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 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
National Practices Survey
Family Surveys
Family Survey Design:
Identified Experiences with:
•Early Intervention
•Natural Environment
•Service Coordination
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
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.
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
Eliminated
practice themes
that are directly
related to service
coordinators who
also provide
direct service.
Categories
Grouped practice
categories with
Dunst’s national
survey
Help giving
Collaboration
Administration
Development of Practice
Categories
Instrumental:
Providing information
Ensuring understanding
Formal and informal supports
Categories
Relational:
Providing support and encouragement
Help giving
Communication among team members
Collaboration
Administration
Collaborating with community
organizations
Administrative duties
Professional development
Activities
Inputs
State Policies and
Infrastructure
- context
- values
- lead agency
- funding
- training
- case loads
- service delivery
options
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
Community
Resources,
Services and
Supports
- rural, suburban,
urban
- early childhood
programs
- early childhood
learning
opportunities
- family support
mechanisms
- family /child
services
- financial
infrastructure
Service
Coordinator
- values
- background
- training
- years experience
- skills
Outcomes
Outputs
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
Short Term
Service
Coordination
Model
- type
- finance of
- case loads
- personnel
standards
Local
Collaborations
- structures
- personnel types
- team models
- relationships
Intermediate
Families are
able to
communicate
the needs of
their child
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
Agencies and
professionals are
coordinated
Service
Coordinator
Practices
-help-giving
- relational
- participatory
- collaborations
- with team
members
- with community
organizations
- administration
- tasks
- professional
development
Long
Term
Families have
access to
support,
information
and education
to address
their individual
needs
Children and
families receive
quality service
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
Children’s
health and
development
is enhanced
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
Service Coordinator ToolKit
Activity: Coordinating with Medical and Health Providers
Coordinating with Medical and Health Providers
Help Giving
Collaboration
Administration
Evaluation
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:
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.
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:
Overview
Help Giving
Tips
Resources

Child’s involvement with medical and health care
providers
Videos
Administration

Child’s history of hospitalizations
Forms
Evaluation

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
Collaboration
Service Coordinator ToolKit
Activity: Coordinating with Medical and Health Providers
Overview
Help Giving


Collaboration
Administration
Evaluation

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
Tips
Resources
Videos
Forms
Service Coordinator ToolKit
Activity: Coordinating with Medical and Health Providers
Overview

Help Giving
Collaboration
Administration


Evaluation

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
Tips
Resources
Videos
Forms
Service Coordinator ToolKit
Activity: Coordinating with Medical and Health Providers
Overview
•
Help Giving
Collaboration
Administration
Evaluation
1.
2.
3.
4.
5.
6.
Feedback From Family:
Disagree
Somewhat Agree
Strongly Agree
My child receives care within a medical home
I feel my child’s medical and health needs are
met
My child has the health insurance he or she
needs
My family’s confidential information is kept
private
My service coordinator is adequately
coordinating my child’s medical and health
services
I have the support, knowledge and tools to
coordinate the medical and health services
for my child
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:
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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 Reports
Newsletters
Project Updates
•Articles
•Trainings