A Community-Based Advocacy Mentorship Program for Low-Resourced Latinx Parents of Children with ASD in the U.S

Background:

Research suggests that Latinx children get a diagnosis of ASD 2.5 years later than White children. Likewise, Latinx children are more likely to be misidentified with other disabilities instead of ASD. Moreover, in California, Latinx children receive about only 50% of State-sponsored resources and services when compared to White children. Disparities for Latinx children with ASD are a persistent issue in care and education systems in the U.S. Research suggests that Latinx parents are in dire need of advocacy training in order to address this disparity in diagnosis and services. This study was designed to rigorously test, using randomization, a parent-to-parent IEP advocacy program for parents of children with ASD within a low-resourced, mostly Latinx population in Southern California. The study design includes randomization to a parent advocacy mentorship about the Individualized Education Program for their child or to a control group (program materials).

Objectives:

RQ1-Does a parent-to-parent advocacy mentorship program for parents of young children with ASD increase their advocacy knowledge (i.e. their rights under the Individuals with Disabilities Education Act (IDEA))? RQ2: Does a parent-to-parent advocacy mentorship program for parents of children with ASD increase their family empowerment and family advocacy outcomes (i.e. their likelihood to exercise their rights under IDEA)?

Methods:

This study examines the effects of a PARENT INTERVENTION- a parent-to-parent advocacy IEP mentorship program for low-resourced parents of children with ASD—on parent empowerment and IEP advocacy skills. Recruitment of parents and parent mentors, development and delivery of the intervention, and data collection was conducted employing Community-Partnered Participatory Research. The intervention was developed in English and Spanish and employing culturally sensitive materials. A total of 21 parents participated in the study. Parents were randomly assigned to receive the PARENT INTERVENTION or to a CONTROL group. Parents in the PARENT INTERVENTION group (n=10) participated in 3 one-on-one meetings with a community Parent Advocate at the parent’s home or a public space. Parents in the CONTROL (n=11) group received intervention materials after the conclusion of the study.

Results:

There was a significant increase in parents’ IEP advocacy skills (i.e. Knowledge of their rights under IDEA) for parents in the PARENT group when compared to the CONTROL group. There were no statistically significant differences between the PARENT group and the CONTROL group for family empowerment or family advocacy outcomes.

Conclusions:

A low-intensity, low-cost community-based intervention may improve Latinx parents advocacy skills in the IEP process which can ultimately lead to better services for their children. The intervention did not yield positive gains in measures of family empowerment and family outcomes, which were already at high levels prior to intervention.