Advocacy Experiences Among Rural Parents of Children With Disabilities

Parent advocacy is an essential component to help children with disabilities receive appropriate school services. However, there are limited studies about parent advocacy for children with disabilities living in rural areas. To address this issue, semistructured interviews were conducted with 12 parents of children with disabilities. The purpose of the study was to identify and define unique barriers and facilitators to advocacy among families of children with disabilities living in rural areas. Constant comparative analysis was used to analyze the interview data. The findings suggest that families living in rural areas lack the necessary resources to advocate successfully for their children with disabilities. Notably, participants expressed that advocating and maintaining relationships with school personnel took an emotional toll. Participants also reported that relationships with school personnel outside of school impacted their experiences with advocacy. Implications for research and practice are discussed.

Parent Advocacy for Lives That Matter

This article draws parallels between the concept of “Black lives matter” and the efforts of caregivers to advocate for the value of the lives of their children who have disabilities. The authors identify three key concepts that undergird their argument: first, the concept of systemic bias as built in to the hierarchical valuing of different disabilities and the role of this bias in the valuing of parents’ voices; second, the ways in which stigmatized identity markers intersect to intensify bias; and third, the authors propose a broad interpretation of the meaning of parent advocacy in which service providers seek to work as co-advocates rather than as professional advisors. The authors review relevant literature on these themes and also draw on their own experiences as women of color who are parents of children with disabilities. They present their exploration of these topics against the backdrop of the convergence of the COVID-19 pandemic and the Black Lives Matter movement, and call on epistemological assumptions and intersectionality to address the question of whether participants’ perspectives on racism should be considered as “truth.”

Randomized pilot study of a special education advocacy program for Latinx/minority parents of children with autism spectrum disorder

This study reports on a randomized controlled pilot intervention study examining the effectiveness and feasibility of a low-intensity (i.e. three sessions), low-cost, parent advocacy intervention. The intervention study employed community-partnered research methods and targeted a low-income community of mostly Latinx, immigrant-origin parents of children with autism spectrum disorder. The study was designed to test a parent-to-parent advocacy mentorship program in order to increase parent’s special education advocacy knowledge and empowerment. The educational intervention was delivered in Spanish to Spanish-speaking parents. Results indicated significantly increased in parent’s knowledge in the immediate intervention group, but this knowledge did not lead to greater sense of parent’s empowerment. Increases in knowledge about special education rights of their children are the first step toward advocating for services for their children. While parents from low-income, racial/ethnic minority backgrounds, particularly Latinx parents, can significantly increase their advocacy skills with a low-intensity, low-cost program, they may need more support in changing their self-perceptions of empowerment and advocacy. Lay abstract Persistent racial and ethnic disparities in obtaining an autism spectrum disorder diagnosis and services have been documented for Latinx children and other racial/ethnic minorities. This study reports on an educational intervention examining the effectiveness and feasibility of a low-intensity (i.e. three sessions), low-cost, parent advocacy for Latinx and other minority parents of children with autism. Results indicated significantly increased parental knowledge and in the immediate intervention group, but this knowledge did not lead to greater empowerment. While parents from low-income, racial/ethnic minority backgrounds, particularly Latinx parents, can significantly increase their advocacy skills with a low-intensity, low-cost program, they may need more support in changing their self-perceptions of empowerment and advocacy.

Autistic adult and non-autistic parent advocates: Bridging the divide

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence. Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars. Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and nonautistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and nonautistic parents. Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

Advocacy engagement

The current research sought to identify what skills, knowledge, and behaviours (SKBs) in advocacy engagement are closely associated with information literacy skills. The paper examines what role information literacy (IL) skills play in making one an effective advocate by drawing on everyday life situations that involve advocacy such as self-advocacy, social advocacy, patient advocacy, parent advocacy, and policy advocacy. A rapid scoping review was completed using articles published within the last ten years (2008–2019). The articles were retrieved from Academic Search Complete, a multidisciplinary database. The aim of our initial review was to identify what skills, knowledge and behaviours are deemed essential for everyday life situations that involve advocacy. Charting of the literature was then used to map the skills, knowledge and behaviours mentioned in relation to advocacy to information literacy skills. Results showed how the knowledge component in advocacy engagement is closely associated with various IL skills such as finding information, evaluation of information and sharing information. Implications of the study point towards the importance of emphasising IL instruction in broader contexts beyond higher education and/ or academic libraries. The study shows that IL skills are important in the public realm and in primary (elementary) and secondary (high) school contexts as well. Therefore, public librarians and school librarians should be just as engaged in equipping their patrons/clientele with IL skills that may be needed for different types of advocacy such as self-advocacy, parent advocacy and patient advocacy. The study also has implications for humanitarian research and research that involves situations of information poverty as these contexts will often involve advocacy work as well.