We All Benefit When Caregivers Are Empowered

Apr 28 2022

Key Takeaway

Culturally responsive parent advocacy programs, like FIRME, are necessary elements of any special education program. If parents aren’t informed, empowered, and prepared to advocate for their child’s rights, then the entire system suffers. School personnel lose a powerful partner and children miss out on the inclusion of the people who know their strengths and needs best. —Erin Madonna

Rios, Burke, and Aleman-Tovar’s study focused on Latinx families with children who have intellectual and/or developmental disabilities (IDD), including autism spectrum disorders (ASD). The study inquired into one avenue, a pilot-test of the Familias Incluidas en Recibiendo Mejor Educación Especial (FIRME) advocacy program, for removing systemic barriers for Latinx families so that they are better able to ensure that their children are receiving the special education or disability services they deserve. 

Previous studies have shown that special education knowledge, empowerment, and advocacy are all aspects that can remove systemic barriers for families of students with disabilities.1-4 Increased parental stress can also impact a family’s preparedness to advocate for and access disability services.5 Increased levels of stress can be particularly challenging when other barriers exist simultaneously, such as language differences, lack of resources, inequitable power dynamics, or racism exhibited by school personnel. The study utilized both surveys (quantitative) and interviews (qualitative) to articulate the results of the FIRME program’s use with Latinx families of students with IDD.

Culturally-Responsive Approach

Knowing all of this and employing it successfully through an advocacy program within the Latinx community also requires culturally responsive practices, which the authors considered carefully in their recruitment phase as well as throughout the study. Prior to inviting parents to participate in the study, the authors volunteered with Latinx groups and conducted other research projects within the community in order to develop relationships of trust with the families. The sessions were organized in locations accessible by public transportation and participants were provided a small stipend for their time. The FIRME program was delivered in Spanish and families had the option to conduct their interviews in their preferred language.

Research Questions:

Author’s Hypotheses:

Primary Findings:

In the Families’ Words

A powerful aspect of this study is the inclusion of the parents’ personal reflections. While causation could not be established due to the lack of a control group, it is clear that the families involved perceived their participation in a positive light. As one family member stated, “I feel more confident to sit at the IEP meeting and disagree if something is said that I don’t agree with . . . and now, I could just ask questions as well, and if I don’t understand something, stop them [school personnel] and say, you know, I didn’t understand it . . . so, I feel really empowered.” One parent started a parent support group to share what she had learned, and another stated that “this [FIRME] will give me the opportunity in the future to help other parents of the Latinx community who have to know how to navigate the IEP.” Parents also reported feeling more supported post-intervention: “Yes, I really liked [hearing from other parents] because now I don’t feel that I am alone.”

Limitations and Implications for Future Research:

The authors note that, while promising, the findings should be considered with the following understandings and recommendations in mind:

Summarized Article:

Rios, K., Burke, M. M., & Aleman-Tovar, J. (2021). A Study of the Families Included in Receiving Better Special Education Services (FIRME) Project for Latinx Families of Children with Autism and Developmental Disabilities. Journal of Autism and Developmental Disorders, 1-15. https://doi.org/10.1007/s10803-020-04827-3

Summary by: Erin Madonna- Erin philosophically aligns with the MARIO Framework’s deeply rooted belief that all learners are capable, and she firmly believes in MARIO’s commitment to the use of evidence-based practices drawn from the field of multidisciplinary research.

Researcher Meghan M. Burke participated in the final version of this summary.

Additional References:

  1. Burke, M., Arnold, C., & Owen, A. (2018a). Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56(2), 90–100. https:// doi.org/10.1352/1934-9556-56.2.90.
  2. Casagrande, K. A., & Ingersoll, B. R. (2017). Service delivery outcomes in ASD: Role of parent education, empowerment, and professional partnerships. Journal of Child and Family Studies, 26(9), 2386–2395. https://doi.org/10.1007/s10826-017-0759-8.
  3. Cohen, S. R. (2013). Advocacy for the “Abandonados”: Harnessing cultural beliefs for latino families and their children with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 71–78. https://doi.org/10.1111/jppi.12021.
  4. Taylor, J. L., Hodapp, R. M., Burke, M. M., Waitz-Kudla, S. N., & Rabideau, C. (2017). Training parents of youth with autism spectrum disorder to advocate for adult disability services: Results from a pilot randomized controlled trial. Journal of Autism and Developmental Disorders, 47, 846–857. https://doi.org/10.1007/ s10803-016-2994-z. 
  5. Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. https://doi.org/10.1177/0741932508324401.

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