News and Knowledge

In 2014, OAR’s Board of Directors authorized funding for seven new applied autism research studies in 2015. This additional $210,000 in research grants brings the total funds awarded by OAR to over $3.3 million since its first grants in January 2003. This is the fourth of seven previews that will be featured in The OARacle over the next few months.

Although many parents struggle to ensure that their children with disabilities receive appropriate educational services, Spanish-speaking parents of children with disabilities face additional logistical and attitudinal obstacles in obtaining services and building partnerships with their child’s school. Those obstacles loom even larger for Spanish-speaking parents of children with autism spectrum disorder (ASD).

OAR-funded researcher Meghan Burke, Ph.D., is examining the effectiveness of a Latino parent leadership support program that may be able to help those parents overcome the obstacles they face. Specifically, she hopes that the program will increase empowerment, communication with the school, special education knowledge, student progress, quality of the family-school partnership, and satisfaction with services. That goal includes empowering the parents to ask for qualified translators to attend IEP meetings, for example, and for materials to be translated.

“We had 109 Spanish-speaking families express interest in the parent advocacy training. We had 26 families complete the training in March (more than we expected). These families, mainly mothers, are incredible people. They continually reported to me that they enjoyed the training. In turn, I learned so much about their resilience, the barriers they face in advocacy, and needed next steps,” reported Dr. Burke recently.

The program focuses on training parents to be leaders so that they can support other Latino families, which is one of the primary goals for this study. Although advocacy training has shown to be effective in securing services, it has yet to be applied to Spanish-speaking families.

Dr. Burke is an assistant professor in the Department of Special Education at the University of Illinois at Urbana-Champaign. She is partnering with Grupo Salto, a non-profit organization dedicated to providing support for families of children with ASD and whose primary language is Spanish; the Family Resource Center on Disabilities, a parent training and information center; and Sandy Magaña, a professor in the Department of Disability and Human Development at the University of Illinois at Urbana-Champaign to carry out this study.

Dr. Burke adapted a volunteer advocacy program she developed for parents of children with disabilities to be used for this study. To determine the effectiveness of the Latino Parent Leadership Support Project, she and her team will collect data about the families each parent leader works with and conduct a control trial to compare results.

Forty parents will participate in the project, assigned to either the program or to a wait list control group. Families in the waitlist group will begin the program after the intervention group has completed the training.

Each training session, which will be conducted in Spanish using Spanish-language materials, will last three hours with a total of 12 sessions, held once a week for 12 weeks. Sessions are related to special education policy as well as non-adversarial advocacy. Participants learn about evaluations, IEPs, discipline, research-based interventions, transition, and assistive technology. Participants also learn how to document school-related activities, write letters, and communicate effectively.

To provide familiarity with terms and documents that may be available only in English, the training includes acronyms and special education terminology and forms and requests in both Spanish and English. Dr. Burke notes that it is not currently required that the IEP must be translated. In the work she has done so far, parents have reported that that they would like to advocate for translation of all documents.

Once parents “graduate” from the program, they will be matched with four Spanish-speaking families to share the knowledge and expertise they gained in the program.

The program’s effectiveness will be evaluated through pre- and post-program surveys. Participants will also request IEP meetings and record them before and after the first training so that the research team can evaluate the recordings to determine if the training the parents received helped them to increase their participation, ask questions, and offer insight. After the training, parents will participate in focus groups to discuss barriers and strategies to supporting families like theirs.

Dr. Burke expects that students whose parents participate in this study will receive more services and, subsequently, demonstrate greater academic achievement. By training an initial group of 40 Latino parents and connecting each parent to additional families, Dr. Burke notes that 160 additional sets of parents will benefit from the program.

Through the partnership with the Family Resource Center on Disabilities, Dr. Burke expects to be able to share the results of the study with 103 other parent training and information centers across the country, allowing them to replicate the program in their communities. In addition, she and her colleagues plan to use data from this study in support of a subsequent study to examine the potential impact of the program on student achievement.