Parent Perceptions of the Advocacy Expectation in Special Education

Abstract

Although the Individuals With Disabilities Education Improvement Act (IDEA) mandates parent participation in their children’s education programs, the implementation of IDEA results in parent effort beyond participation, specifically, an expectation of advocacy. To date, research on the advocacy expectation is mixed, with some parents perceiving advocacy as an obligation to ensure appropriate services for their children, whereas others argue it is unreasonable and has cultural dissonance, disadvantaging some parents. We examined parent perspectives of the advocacy expectation in special education through 19 focus groups with 127 parents of children with disabilities across four states. Findings included a nuanced understanding of the advocacy expectation, with participants reporting the importance of advocacy and some describing that advocacy was part of their social role. However, under adversarial circumstances with school personnel, participants described feeling overwhelmed because the advocacy expectation felt more difficult than it needed to be. We discuss implications for policy and practice.

Leaders’ Visions of Rehabilitation Services for Children in Ontario’s Schools: Effective Collaboration between Education and Health Sectors

“…The need to support school leaders through knowledge building on effectively partnering with therapists and families was emphasized by superintendent participants in this study. Evidence supporting such an approach highlights the important role school leaders play in creating conditions which enable effective service partnerships in schools (Anaby et al, 2019;Campbell et al, 2016;Missiuna & Hecimovich, 2015;Phoenix et al, 2021;Rossetti et al, 2021;Villeneuve, 2009;Villeneuve & Shulha, 2012;Wintle et al, 2017). Learning was highly valued by participants and was emphasized as the preferred way of having everyone enter into partnership (i.e., the learning stance), as well as a priority output for all partners according to their specific needs.…”

“…For over 30 years, researchers have emphasized the importance of the support and engagement of leaders at the school and system-level to enable effective collaboration of teachers and therapists in service of children with or at risk of disability and working in partnership with parents. For many years, researchers have emphasized the importance of the support and engagement of leaders at the school and system-level to enable effective collaboration of teachers and therapists in service of children with or at risk of disability and working in partnership with parents (Barnes & Turner, 2001;Eron, 2021;Fairbairn & Davidson, 1993;Hernandez, 2013;Kramer-Roy et al, 2020;Nochajski, 2001;Rossetti et al, 2021;Villeneuve, 2009). A systematic review of 34 studies on collaborative mod-Open Journal of Social Sciences els for health and education professionals working in school settings and implications for training pointed to the need for significant work from individuals and lead agencies to ensure successful collaboration that is child-focused and inclusive of families (Hillier et al, 2010).…”

“…This review acknowledged the importance of further study of "administrator training, preparedness, perceptions, and beliefs related to school-based health promotion" (Webster et al, 2020: p. 14). Similarly, Rossetti et al (2021) advocate that leaders have a responsibility to lessen the advocacy burden on parents of children with disabilities through intentional policy and practice measures that enable parent participation in decision-making for their child. Moreover, Karisa and colleagues (2020) challenge government and system leaders to re-evaluate barriers within school system design as these could limit the pursuit of inclusive education; examples of this include rigid curriculum targets and special education-oriented cohort models.…”

Movement Toward Critical Consciousness and Humility Through Family as Faculty Approaches

“…Oftentimes, family engagement is predicated on ensuring that their child has access to appropriate resources, is being treated fairly, is being provided with special education services delineated in the Individualized Education or Section 504 Plan, and is, overall, feeling a sense of belonging and care within educational and learning spaces (Hirano et al, 2018). There is a documented history of families involved in special education as advocates (Rossetti et al, 2021), as partners (Gershwin et al, 2022), and as important contributors to enriching learning and promoting equitable practices both within and outside of school or educational settings (Vaughn & Super, 2019).…”

Reconceptualizing Parents as Policy Agents Within Special Education

“…We argue that parents are, in effect, assigned responsibility to act as “policy agents” who “[shape] the definition, direction, and evolution” of SE policy implementation for their child (Dorner, 2012, p. 464). Indeed, federal SE policy cannot operate without the pivotal participation of parents (Buren et al, 2022; Rossetti et al, 2021; Turnbull et al, 2020; Yell, 2019). Through parents’ work as active participants in the disability identification process, development of individualized SE plans, and ongoing monitoring to hold school systems accountable for the provision of services (Underwood & Mead, 1995; Yell, 2019), we argue that parents are constructed by SE law to be initiators, developers, and enforcers of SE policy.…”