Supporting children with disabilities at school: implications for the advocate role in professional practice and education

Abstract

Purpose: School settings are a common practice context for rehabilitation professionals; health advocacy is a common and challenging practice role for professionals in this context. This study explored how pediatric practitioners advocate for children with disabilities at school. Specifically, we examined everyday advocacy in the context of school-based support for children with disabilities. Method: Our theoretical framework and methodological approach were informed by institutional ethnography, which maps and makes visible hidden social coordinators of work processes with a view to improving processes and outcomes. We included families, educators, and health/rehabilitation practitioners from Ontario. Of the 37 consented informants, 27 were interviewed and 15 observed. Documents and texts were collected from the micro-level (e.g. clinician reports) and the macro-level (e.g. policies). Results: Pediatric practitioners' advocacy work included two main work processes: spotlighting invisible disabilities and orienteering the special education terrain. Practitioners advocated indirectly, by proxy, with common proxies being documents and parents. Unintended consequences of advocacy by proxy included conflict and inefficiency, which were often unknown to the practitioner. Conclusions: The findings of this study provide practice-based knowledge about advocacy for children with disabilities, which may be used to inform further development of competency frameworks and continuing education for pediatric practitioners. The findings also show how everyday practices are influenced by policies and social discourses and how rehabilitation professionals may enact change.Implications for RehabilitationRehabilitation professionals frequently perform advocacy work. They may find it beneficial to perform advocacy work that is informed by overarching professional and ethical guidelines, and a nuanced understanding of local processes and structures.Competency frameworks and education for pediatric rehabilitation professionals may be improved by: encouraging professionals to consider how their practices, including their written documents, may affect parental burden, (mis)interpretation by document recipients, and potential unintended consequences.Policies and texts, e.g. privacy legislation and the Diagnostic and Statistical Manual (DSM), influence rehabilitation professionals' actions and interactions when supporting children with disabilities at school.An awareness of the influence of policies and texts may enable practitioners to work more effectively within current systems when supporting individuals with disabilities.

Blurring the boundaries: using institutional ethnography to inquire into health professions education and practice

“…For example, consider the practice of a clinician writing and sending reports to another as a routine activity. 36 Identifying specifically how this routine activity happens can lead to IE's further aim of revealing how the act of sending a report is organised by a seemingly distant policy such as privacy legislation. 36 IE analysis sets out to identify how recurrent and regularised practices are embedded in everyday activity and how they are orchestrated by social relations beyond the local setting of, in this example, the people doing the 'work' of writing and sending reports.…”

“…33,38 In our first example (Box 1), we consider the dissonance between policies intended to support children with disabilities and how professionals and families actually experience these policies in practice. 36 Disjuncture serves as the analytical entry point for IE inquiry. 38 Investigating disjunctures leads to the identification of the research 'problematic'.…”

“…46 We thus suggest that a conceptual dichotomy of research belonging to the clinical practice world and research belonging to the HPE world is simultaneously productive and unnecessary. Drawing lines may help a field focus and encourage Box 1 Example of the use of disjuncture and problematic in institutional ethnography 36,50 This example arose out of a recurrent disjuncture in practice. As a health professional and education researcher practising in a school system to support children with disabilities at school, I (SN) increasingly felt that something was amiss, but I could not put my finger on the root cause of what was wrong.…”

“…All of this perpetuates unproductive and problematic cycles of practice. 36 This regularised and troubling experience serves as the problematic for the IE study, which organises our ongoing analysis and is summarised as follows: when health professionals' knowledge is needed or wanted in a special education setting, what work is taking place, who is doing the work, and what is coordinating this work? 50 Orienting the research toward 'work' as defined by IE, the researchers were able not only to describe the activities of all involved (including unofficial yet instrumental 'work' activities that may otherwise be put in the background or overlooked), but also to search out the ways in which such activities were orchestrated.…”

“…Yet, developing an understanding of challenges to advocacy in practice is fundamental to describing and teaching about health advocacy as per the CanMEDS Physician Competency framework or in systems-based practice in the Accreditation Council for Graduate Medical Education competency profile. 36 The second study profiled in Box 2 about 'failures to cope' 48 explored the implications of efficiency discourses within acute care settings. It produced unexpected and important understandings of the term's influence on how residents learn.…”