Advocacy by Parents of Young Children With Special Needs: Activities, Processes, and Perceived Effectiveness

Abstract

This article examines parental advocacy for young children with disabilities using a subset of data drawn from a larger exploratory and descriptive study on parental advocacy for children with disabilities from birth to age 18 with a sample of 400 participants. Because this article focuses on parents of children from birth to age 6, only parents (n = 76) meeting this criterion were selected. Data were collected through an online survey, with a snowball sample generated through e-mail lists and social media groups. The survey included questions on demographics, types of advocacy settings, perceived effectiveness of advocacy efforts, and an example of a successful advocacy effort. Parental advocacy was most common in schools, medical clinics, social services, and social media and involved processes such as educating oneself about the child's condition and rights for services, educating others including professionals, and making persistent efforts. These findings suggest advocacy on behalf of children with disabilities starts early and is important from birth to age 6. Policy and social work practice should help parents with support, knowledge, and skills to be effective advocates for their children. Future research is recommended to explore the relationships between advocacy, empowerment, coping, and resilience in parents of children with special needs.

The phenomenon of legislative advocacy among parents of children with disabilities

“…Consistent with a previous study about parent LA (Wright and Taylor, ), some study participants ( n = 16) reported positive advocacy experiences. These sixteen participants reported that legislators listened to stories about their children; the participants also reported that their meetings with legislators resulted in favourable outcomes.…”

“…Mixed experiences with LA. Unlike previous studies wherein parents only reported positive experiences (Wright and Taylor, 2014), in this study, parents reported mixed experiences with respect to LA. Parents who reported positive experiences reported that their legislators listened to their stories resulting in policy changes.…”

“…As a first step in examining LA, it is necessary to understand the phenomenon of LA among parents. In a national study of parent advocacy, only 3.95% ( n = 3) of the participants engaged in LA (Wright and Taylor, ). All three parents reported positive experiences with their legislators.…”

Community building and knowledge sharing by individuals with disabilities using social media

“…The authors noted "since the outset of the austerity programme, platforms such as blogs, Twitter and Facebook have proved important tools for disability activism in challenging government policy" (p. 928). Wright and Taylor (2014) gave a questionnaire through social media to parents of children with special needs. Of the 76 participants with children from birth to age 6, 51% indicated social media as a place for advocacy and 13% indicated social media was a "highly effective" (p. 597) way to advocate.…”

Correlates of Sustained Volunteering: Advocacy for Students with Disabilities

“…According the Council of Parent Attorneys and Advocates (COPAA), which focuses on special education advocacy, an advocate is defined as, “…someone who speaks, writes in favor of, supports, advises or urges by argument in support of another person,” (COPAA, 2012b). In the parent advocacy literature, however, the term “advocate” has been described differently in a variety of contexts (Wright & Taylor, 2014), approaches (Trainor, 2010), and activities (Balcazar, Keys, Bertram, & Rizzo, 1996). To fulfill the post-graduation requirement of the VAP training, graduates may engage in a broadly defined range of advocacy activities related to the special education needs of the child, with the goal of working towards provision of FAPE for students with disabilities (COPAA, 2008).…”