Transcript Research & Training Center in Service Coordination CFDA

Research & Training Center
in Service Coordination
CFDA # 84.324L
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
[email protected]
Website: www.uconnucedd.org
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
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.
Center Framework
Family
Service Provision
System Administration
I.
II.
III.
Status
Outcomes
Recommended
Practices
IV. Measurement
V. Training Model
VI.
Dissemination
Surveys
Focus
Groups
Delphi
Technique
Outcome
Validation
Measurement Studies
Objective 1
WHAT WE DID:
Described current models of
service coordination
HOW WE DID IT:
Series of Surveys
Survey Design
Part C
Survey
Curricula
Survey
 Examine current
 Status of Part C
49 closed-ended
questions
5 open-ended
questions
Mail, e-mail, faxes
Telephone interview,
emails, faxes
models of SC
 Roles of Parents
 SC Policy
 Monitoring and
evaluation SC
 Financing
SC training
-models
-curricula
-follow-up
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 openended questions
Telephone interviews
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
Parent ICC
Survey
319 Parent Leaders in
50 States and DC
Parent Leaders in each
of 50 States who
serve on ICC boards
Survey Findings
Part C
Survey
N=57
Curricula
Survey
N=55
Parent Leader
Survey
N=319
Parent ICC
Survey
N=50
39 Part C Coordinators
reported lack of
uniformity in provision
of service coordination
Average length of
training in 37 states =
2-3 days
83 families did not
learn who their service
coordinator was until
after the IFSP
30 ICC parent
representatives
considered themselves
familiar with federal
regulations
36 states used a
regional approach
27 states mandated
service coordination
training
Service Coordinator
caseloads ranged from
9-70 with a mean of
38
26 states were in the
process of developing
service coordination
training
17 states were
changing service
coordination models
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
32 parent
representatives said
their ICCs were
familiar with federal
regulations
24 were unsure if the
state had specific
service coordination
models
System Infrastructure:
WHAT IS NEEDED TO SUPPORT
EFFECTIVE SERVICE COORDINATION
Case Study States
 Dedicated and Independent
 Blended with Intervention – LA
 Blended with Intervention – IA
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.)
Which Model is Best?
FINDINGS:
 Differences in nature of some system
components
SYSTEM
INFRASTRUCTURE
SERVICE
COORDINATION
PRACTICES
CHILD AND FAMILY
OUTCOMES
Which Model is Best?
 Not a useful question
 Multiple factors – not just the model
were associated with positive outcomes
Approaches and their Assumptions
ANALYSIS REVEALED
 Assumptions not always realized
 Multiple factors could influence whether
the original assumptions were realized
Dedicated Approach
ASSUMPTIONS
 Can spend more time on S.C.
 Specialist Needed
 Offer Broader Array
 More Choice for Families
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
Blended Approach
ASSUMPTIONS
 Most knowledgeable about child and family
needs
 More effectively communicate with other
providers
 Family more likely to reveal needs
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
Variable Approach
ASSUMPTIONS
 No model is best
 Locals know best
 Individualization of approach is more
likely to meet needs
Variable Approach
WHAT CAN GO WRONG?
 Pragmatic decision, not data-based
 What locals “think is best” may not be
 Lack of consistency confuses parents
Influential Factors
 Empowering Relationship
 Case
Load
 Use of Family Support Approach
 Parent Choice
 Array of Resources
 Breadth
of Service System
 Interagency Linkages
Influential Factors
 Integration of Services
 Transdisciplinary
 Routines-Based
 Integrated
Therapies
 IFSPs With All Needs and Services
 Interagency Training
 Mechanisms to link needs to resources
Influential Factors
 Learning Opportunities in Natural Settings
 Identification of New Needs
 Frequency
 Case
of Contact
Load
 Interagency Linkages
Influential Factors
 Knowledgeable Personnel
 Diverse
disabilities and conditions
 Resources
 Capacity building
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:
Five Outcomes were identified as
primarily desired benefits of service
coordination
-System Coordination
-Information and referral
-Family support and resources
-Family-centered practices
-Teaming
-Natural Environments
-Service Coordination
-Early Intervention
Parent Practitioner Sampling
879 EI program practitioners and
directors and parents of children
with disabilities in 48 states
Two outcomes were valued
Outcomes of all three services:
-519 Program practitioners
and directors
-Family satisfaction
-Improved quality of life
-360 Parents
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

Frequencies of practices calculated for each outcome
statement.

Development of National Delphi Survey.
Practice Delphi Design and Findings
Delphi II Design
1.
2.
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 >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:
Family Survey Findings:
Identified Experiences with:
Little or no attention is paid to non-EI
services provided by EI programs
Early Intervention
Natural Environment
Service Coordination
National Family Sampling:
358 parents of children with
disabilities in 45 states
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.
Objective 4
WHAT WE DID:
Measured outcomes and practices
of effective Service Coordination
HOW WE DID IT:
Interviews with families, families’
service coordinators and IFSP review
Interview Design
Four Focal States
Connecticut, Indiana, North Carolina, Massachusetts
Additional States
Arizona, Utah, Washington State
Interview Protocol
Semi-structured questions
Probes
Interview Form
Interview Sampling
Connecticut, Indiana, North Carolina, Massachusetts
Families
N=80
Service Coordinators
N=80
Ethnicity
Full or Part-time employment
Child’s age
Caseloads
Child’s level of functioning
Years experience
Family location
Amount of training
Socio economic status
IFSPs
N=80
Interview Sampling
Washington, Arizona, Utah
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
IFSPs
N=30
Family Demographics
(N=98)
Location
Frequency
Percent
Urban
37
37.8
Suburban
36
36.7
Rural
25
25.5
Ethnicity
Frequency
Percent
Black
22
22.4
White
49
50.0
Latino
13
13.3
Other
14
14.3
Family Demographics
Income
Frequency
Percent
Low
39
39.8
Not low
59
60.2
Child’s Age
Frequency
Percent
0-1
24
24.5
1-2
32
32.7
2-3
42
42.8
Needs
Frequency
Percent
Mild
44
44.9
Moderate
31
31.6
Complex
23
23.5
Service Coordinator Demographics
(N=76)
Employment
Frequency
Percent
Part time
28
36.8
Full time
48
63.2
Frequency
Percent
0-1
12
15.8
1.1-5
36
47.4
5.1-10
21
27.6
10.1-15
4
5.3
15.1-20
2
2.6
20.1+
1
1.3
Experience (years)
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.
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.
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.
Interview Outcomes
FAMILY
CHILD
SYSTEM
Families are knowledgeable of their
child’s unique needs
Children are safe and healthy
Children 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 enhanced
Transitions 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
Interview Outcomes: Families vs. Service
Coordinators
Service Coordinators Interviews: 98
vi
c
se
r
n
ea
tio
ec
r
R
Family Interviews: 98
es
s
si
tio
n
/h
af
e
S
Tr
an
ea
lth
y
t
pm
en
ev
el
o
D
K
no
w
S
di
uf
f
sa
bi
ic
i
lit
y
en
t
e
lif
of
y
ua
lit
Q
D
ec
is
io
ns
180
160
140
120
100
80
60
40
20
0
“Who helped make this happen?”
40
35
30
25
20
15
10
5
0
Family
Service
Coordinator
Family Interviews: 98
Service Coordinators Interviews: 98
Service
Provider
Doctor
Other
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.
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
0
ide I
nf o
Obt a
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Spp
rt s
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rdi n
ate S
r vcs
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dvlp
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Dvl p
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IFSP
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Dvl p
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Interview Practices: Families vs. Service
Coordinators
300
250
200
150
100
50
Family
SC
N=98
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
IFSP Data Graph – Agencies used
70
62
Number of Families
60
50
40
30
16
20
10
10
8
0
2
0
1
2
3
4
Number of Agencies
5
6
IFSP Data Graph – Location of service
n
r
at
io
th
e
rm
O
e
e
Ca
r
9.65%
fo
In
D
ity
ng
si
M
is
om
m
un
0.77%
ay
S
lin
ite
7.34%
H
om
3.86%
ic
2.32%
C
en
t
er
8.9%
C
80
70
60
50
40
30
20
10
0
C
Percentage
67.57%
Convergence of Data Sources
LOGIC MODEL
State Strategic Planning
Ohio
Colorado
RTC
North
Carolina
Florida
Strategic Planning Process
 Vision
 Mission
 Objectives
 Resources
 Action Plan
 Evaluation Plan
For More Information
•UCEDD Web Site:
http://www.uconnced.org/
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