Background and Need:

Autism is a growing public health concern (Autism and

Developmental Disabilities Monitoring Network, 2009)
Little clinician support to families in acting on the treatment
recommendations (Banach, Ludice, Conway, & Couse, 2010)
Families often coordinate their own services (autism treatment
network, 2009)
Need for interventions that will help families understand and
access the existing systems of care
Parent-to-Parent (P2P) mentoring programs can access built-in
expertise (Santelli, Turnbull, Marquis, & Lerner, 1995)
Goal:
Develop and test a systematic P2P and parent education model
Improve the quality of life for parents of children diagnosed with
ASD
Provide a sense of empowerment for families to feel confident in
their ability to make decisions concerning setting up supports and
services for their child
Improve overall access to care

The Colorado Parent Mentoring Program (CPM) is a

comprehensive family support program that provides two sources
of support: 1) expert education, and 2) a P2P mentoring program.
Enrollment within first year after diagnosis.
Action Plans: Individualized education and assistance in
thinking critically about intervention and support, plan to access
care, strategies for school collaboration and family care.
Navigation training: In depth training regarding navigating
systems of care in Colorado.
Parent to Parent Mentorship: Trained parent mentors
followed up with mentees for 6 months.

Design

RCT (active vs. waitlist control)

Initial diagnosis from partner clinics
Action planning/Navigation meetings
within 3 months of diagnisos
Monthly contact with Mentor
Post measures after last mentor check
in

Mentee characteristics

Parent of child with ASD, diagnosis

within 3 months
First child with ASD
No serious mental health problems
Willing to fill out study materials and
attend all meetings
Diagnosed at one of 3 local clinics
(not Ed ID)
Access to transportation to facility

Mentor characteristics

Parent of child with ASD diagnosis

at least 2 years ago
No serious mental health problems
Attend two-day training on
providing unbiased emotional
support

Hypotheses:
1) The program will be highly acceptable to participants
(qualitative reports)
2) The program will improve family quality of life (FQOL and
Qualitative interview)
3) The program will improve family functioning (FQOL,
FACES-IV, PSI & PSOC)
4) The program will improve access to care (Service
utilization)

Figure 1. Satisfaction with emotional QOL for active

and waitlist group, pre to post.

Satisfaction with program and quality

of life (Qualitative interview)
Family Quality of Life Scale (FQOL)
Parenting Stress Index (PSI)
Parenting Sense of Competence
Scale (PSOC)
Monthly service utilization

Exit interviews (n = 12)

Grounded theory analysis

Major themes
Program is highly acceptable and satisfying
Action planning highly valuable in prioritizing services and locating
access points
Appreciate having actionable items to address their childs and familys
needs
Feel more empowered, less isolated and a greater sense of community
Often make a wide variety of intervention choices
Appreciate having mentor for ongoing support
Improved emotional quality of life

Quantitative analysis
Active n = 29; Waitlist = 32
Linear mixed models with parent gender, race, ethnicity, education and
childs level of impairment as covariates.
Main findings
FQOL:
Improved satisfaction with disability related supports in active
group
Waitlist group reported more importance in parenting, and family
interaction
Increases in satisfaction with parenting, material wellbeing over
time for both groups.
FACES-IV:
Increased rigidity and balanced flexibility in waitlist group
PSI, PSOC,
No differences
Service utilization
No group differences
All groups received more out of school services over time, but
significantly less than national recommendations (25 hours).

Conclusions:

Measures

Qualitative analysis

Figure 3. Consort table

Figure 2. Satisfaction with disability related supports
for active and waitlist groups, pre to post

Parent mentors can be effectively trained to provide support to other

parents of children with ASD
The CPM program seems to provide families with important tools
when seeking care for their child, resulting in greater satisfaction with
care, less rigidity, possibly as the result of a sense of empowerment
Some areas of functioning improve merely as a matter of time
suggesting the first year after a childs diagnosis is extremely
challenging.
*This study is funded by grants awarded to Principal Investigators Cordelia Robinson and Eric J. Moody (R40MC022643 and 2
T73MC11044-04-00), through the U.S. Department of Health and Human Services, Health Resources and Services Administration,
Maternal and Child Health Bureau and the Colorado Clinical & Translational Sciences Institute (CCTSI) with the Development and
Informatics Service Center (DISC) grant support (NIH/NCRR Colorado CTSI Grant Number UL1 RR025780).