Features of the Parent to Parent Service
Coordination Model for Preschool Children with
ASD in Hartford*
• Families of Children with Autism Spectrum
Disorder
• Living in a High Poverty Environment
• Parent to Parent Service Delivery Model
• Service Coordination
• Measures of Effectiveness Using a Logic Model
Framework
*Grant funded by MCHB to UCHC
Household income
• Hartford Median Income: $29,107
• Connecticut Median Income: $69,243
Hartford
Less than
$15,000
$15,000 to
$24,999
Connecticut
Less than
$15,000
$15,000 to
$24,999
$25,000 to
$34,999
$25,000 to
$34,999
$35,000 to
$49,999
$35,000 to
$49,999
$50,000 to
$74,999
$50,000 to
$74,999
$75,000 to
$99,999
$75,000 to
$99,999
$100,000
or more
$100,000
or more
Race and Ethnicity
Race (Hartford)
White
Race (Connecticut)
White
Black
Black
American Indian and
Alaska Native
Asian
American Indian and
Alaska Native
Native Hawaiian and
Other Pacific Islander
Two or more Races
Native Hawaiian and
Other Pacific Islander
Other
Other
Ethnicity (Hartford)
Asian
Two or more Races
Ethnicity (Connecticut)
Hispanic or Latino (of
any race)
Not Hispanic or Latino
Hispanic or Latino (of
any race)
Not Hispanic or Latino
Evidence Base for Parent to Parent
• Parents can train other Parents on Teaching Their
Children Skills( Bruder & Bricker 1984; Bruder,1987)
• Parent to Parent Programs Serve a Variety of Types of
Families and Provide Emotional Support and
Informational Support (Santelli, Turnbull, Marquis, &
Lerner, 1995;Santelli, Turnbull, Sergeant, et. al, 1996;
Santelli, Turnbull, Marquis, & Lerner, 1997).
• Random Control Study Found Differences in Families who
Received Parent to Parent Support VS Delayed Treatment
Group: cognitive adaptation; coping ( Singer et al, 1999)
Program Features of Parent to Parent
• Parent of a Child
• Veteran Parent of a Child with Similar Needs
• Training of Veteran Parent on Skills:
Communication
Resources
Problem Solving
Referral
• System Of Matching and Supervising Parents
Evidence Base for Service Coordination
• No Evidence for Child or Family Outcomes Improved as a
Result of Service Coordination as a Program Feature
(Bruder & Dunst, 2006; Dunst & Bruder, 2006)
• Research and Training Center Examines and Proposes
Second Generational Research Model
(Bruder, Harbin, Whitbread, Conn-Powers, Roberts,
Dunst, Van Buren, Mazzarella, & Gabbard, 2005).
Service Coordination Activities ( Part C)
• Coordinate the Performance of Evaluation and Assessments
• Coordinate with Health and Medical Providers
• Facilitating and Participating in the Development, Review, and
Evaluation of IFSPs
• Assisting Families in Identifying Available Service Providers
• Coordinating and Monitoring the Delivery of Available
Services
• Informing Families of the Availability of Advocacy Services
• Facilitating the Development of a Transition Plan to Preschool
Services, if Appropriate (C.F.R. §303.302(d))
Outcome Comparisons
INTERVIEW OUTCOMES
DEPHI OUTCOMES
SURVEY OUTCOMES
SYSTEM
Children will have successful
transitions.
Children have successful
transitions.
System Coordination
Children and Families receive early
intervention services that are
individualized, coordinated and
effective.
Children and families receive
appropriate supports and service
s that meet their individual
needs.
Family-Centered Practices
People work together as a team
Teaming
Families are involved in decision
making.
FAMILY
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 involved in decision
making.
Families are informed about
resources and services.
Family Support and Resources
Information and Referral
Quality of Life
Family Support and Resources
Families are self-sufficient.
Families are knowledgeable of their
child’s disability.
Families are satisfied?
Quality of Life
Family Satisfaction
CHILD
Children’s development is enhanced.
Children’s development is
enhanced.
Children are safe and healthy.
Children are healthy.
Service Coordination Practices
• Helpgiving
• Collaborations
• Administrative Tasks
Helpgiving Practices
(Dunst&Trivette, 2009)
• Relational: behaviors such as active listening, compassion,
empathy, etc. and positive practitioner attributions about helpreceiver capabilities
• Participatory: behaviors that involve help-receiver choice and
decision making, and which meaningfully involve participants in
actively obtaining desired resources or supports, or achieving
desired life goals.
Service Coordination Outcomes
IF
•Agencies and professionals are coordinated
•Families have access to support, information and education to address
their individual needs
•Families are able to communicate the needs of their child
•Families make informed decisions about services, resources and
opportunities for their child
•Children and families receive quality services
THEN
•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 in the following areas:
social emotional skills and relationships
acquiring and using knowledge and skills
using appropriate behaviors to meet their needs
Outcomes
Inputs
Output
Activities
Immediate
Families acquire
and/or maintain
a quality of life
to enhance their
well being
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
Distal
Impact
Resulting Model Comprised Of:
• Checklists for Each Service Coordination
Activity Which Embeds Practice Categories
• Outcomes Which Were Adopted and
Refined by OSEP for All Infants, Toddlers
and Preschoolers Receiving Early
Intervention
Initial Intake Checklist
Name:
 / x
The service coordinator will:
Share information about:

Early intervention philosophy

The statewide early intervention system including eligibility
criteria for children

The difference between assessment for evaluation and ongoing
assessment

The role of the family in the assessment process

Procedural safeguards and family rights

Confidentiality policies and practices
Gather information from the family about:

Family background, ethnicity and language preference

Family structure and composition

Child health and development status and history

Family resources, concerns and priorities

Other agencies and professionals involved with the child

Their child’s reaction to strangers (e.g., the interventionist)
Notes
 / x
The service coordinator will:
Collaborate to:

Identify methods of sharing information with others, including
the family
Perform administrative tasks such as:

Get parent permission for the child’s evaluation/assessment

Complete and submit to system releases for information

Complete and submit to system reimbursement information, if
needed (insurance, Medicaid, family payment)

Get and share with the early intervention evaluators records
and past assessments on the child

Gather information about the child’s disability

Get parent permission to store data

Send a letter of acknowledgement about the family to the
referral sources including the medical home
Notes
Parent to Parent Service
Coordination for Preschool Children
with ASD in Hartford
Culturally Compatible Parents who have a Child
with ASD,
Provide Service Coordination using Checklists of
Practices,
And Research Team Collect Data on Measures Of
Effectiveness Using Logic Model
Intervention (Independent Variable)
Identification and Minimal Training Of Veteran
Parents
Use of Activity Checklists
Supervision of Veteran Parent
Service Coordination Process
Family asks SC a
question
SC searches Toolkit and
Curriculum for
information and /or
asks Project staff
Project staff and SC search
IDEA.gov, CT SDE website to
find an answer (SC learns
about resources she can then
share with families)
Family and SC
review outcome
of plan
SC and family
develop a plan to
address issue
SC responds to
family with
answer, shares
resources
Dependent Variables Match Logic Model
• Families Acquired and Maintain a Quality of Life
Family Professional Partnership
Family Quality of Life (Beach Center)
• Families Meet the Special Needs of Their Child
Family Outcomes Survey
IEP Observation
Medical Visit Observation
• Childrens’ Health and Development is Enhanced
IEP Quality
Medical Home Index
Services Inventory
Battelle Developmental Inventory
Pre-Treatment Child Characteristics
• 3- to 5-year old children with ASD
• Mean =47 months
• 83% male
• Battelle Developmental Index
• Mean = 32 months
• Sub-Scale Age Equivalence
• Adult Interaction – M = 18 months
• Peer Interaction – M = 26 months
• Self Concept – M = 18 months
Enrollment
• Completed Time 1 (pre-treatment)
• N = 42
• Completed Time 2 (6-month)
• N = 28
• Completed Time 3 (12-month post-treatment)
• N < 10
Sample
• N=41 (target 50)
• About 65% of sample with gross income < $20,000
• High rates of unemployment
• Especially for mothers ( >63%)
• 50% of parents have high school education or less
• < 10% have 4 year college or graduate degree
• Only 29% of mothers are married
• On scale of 1-10 (with 10 most stress), 60% of parents rated stress
an 8, 9, or 10
• About ½ of families had to miss work due to caring for child with
ASD
• Primary care pediatrician typically little help reducing family stress
or helping find referrals for services
Children
• 3- to 5-year old children with ASD
• M=47 months
• 83% male
• Battelle Developmental Index
• Mean = 31.6
• Sub-Scale Age Equivalence
• Adult Interaction – M = 18 months
• Peer Interaction – M = 26 months
• Self Concept – M = 18 months
Descriptive Results
• Statistically significant change from baseline to 6-month
checkpoint
• I know who to contact and what to do when we have a question
or concerns (Family Outcomes Scale)
• Pre M=2.46
• 6-mo M=3.62
• t = 2.65, p = .02
Questions to Service Coordinators from Families
• PPT related questions
How long does a school district have to schedule a PPT once a
parent requests one in writing?
Who are the required members at a PPT?
Can a required member of a PPT be excused?
Is the school required to give parents reports or assessment
information before the PPT?
What if I disagree with the decisions of the PPT?
• Every Day Routines
How can I help my child with potty training?
How can I increase my child’s participation at mealtime?
Where can I get my child out and about in the community?
I need help with basic needs, clothing, household items, etc.
How do I help my child with communication?
Where can I find a dentist that is experienced with children with
ASD?
I need support for my other children to help them understand ASD?
• Other Questions
If a parent chooses to send their child to a magnet or charter
school can transportation be provided?
Who pays for it if the school and the child’s residence are in
different towns?
How do I add services to my child’s IEP or extend my their day at
school?
If I move what happens to my child’s services in the new school
district?
My transportation is not working, who do I call?
Can you help me with my child at daycare?
Challenges to Implementation
100.00%
90.00%
80.00%
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
Challenges to Implementation
100.00%
90.00%
80.00%
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
Other Challenges (% of visits)
• Family overwhelmed by everyday life and cancels (20%)
• Health of parent major concern (14%)
• Family not home for rescheduled visit (21%)
• Child sick (16%)
• Family leaves during a visit (10%)
• Unsafe neighborhood activity (18%)
• Unable to access home (locked door, not answering; 16%)
Next Steps
• Extension of Project for Another Year
• Solidify Recommendations:
Choice of Veteran Parents
Partnership with Schools To Adopt the
Model as a Service Delivery Component