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University of Colorado/JFK Partners R40 Grantee Studies Support Program for Families of Children with Autism Spectrum Disorder

April 2, 2013

The growing prevalence of autism spectrum disorders (ASD; Centers for Disease Control and Prevention) has left many families in a position where they must decide how best to support their child's needs. Unfortunately, clinicians are rarely available to support families in acting on recommendations from diagnostic reports (Banach, Iudice, Conway, & Couse, 2010). As a result, most families are left to coordinate services for their children on their own (Autism Treatment Network, 2009). This, combined with the other barriers to treatment (Minnes & Steiner, 2009; Summers et al., 2007), may put all family members at risk for mental health problems (Estes et al., 2009; Gabriels, Hill, Pierce, Rogers, & Wehner, 2001). This has led to a tremendous need for interventions that will help families understand and access the existing systems of care. Parent-to-Parent (P2P) mentoring programs (Santelli, Turnbull, Marquis, & Lerner, 1995) are one strategy for accomplishing this; however, few programs have developed systematic curricula  and rigorously evaluated their effects. University of Colorado/JFK Partners (Colorado LEND/UCEDD), funded by the Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA), has developed a support program for families that have recently received a diagnosis of autism spectrum disorder for their child. 

The Colorado Parent Mentoring Program (CPM) provides two sources of support: 1) parent training and education, and 2) a parent-to-parent mentoring program. These two sources of support are focused on the first year immediately after diagnosis. Parent mentors are trained in a two-day program and paired with mentees. For mentees, study staff provide individualized education and assistance in thinking critically about intervention and support, access to care, and develop individualized Action Plans, a comprehensive strategy for determining the child's treatment-needs, plan to access care, strategies for school collaboration and family care. Following the initial meeting, Mentors continue to support the family for 6 months. 

Currently in year two of the three-year grant cycle, the program is being evaluated with a randomized clinical trial. Quality of life, sense of competence, parenting stress, and time to treatment are measured pre and post intervention. Preliminary results show mentors report greater confidence and competence as a result of the training.  All mentees reported feeling more prepared to manage their child's condition as a result of the navigation training and action planning. Data on the mentoring experience is still being collected but initial feedback is promising. Preliminary reports suggest an increased sense of empowerment, decreased isolation and better quality of life.  The study team plans to manualize the program and work with rural community partners locally and nationally to implement sustainable aspects of the model in the final year of the grant. The use of videoconferencing technology and on-line education and training are planned to support families in areas of the country that are underserved and in need of effective and economic ways to connect with resources and support.