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.

Qualitative analysis 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

*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).

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: 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.

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.

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

Measures 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

Figure 2. Satisfaction with disability related supports

for active and waitlist groups, pre to post

Figure 3. Consort table