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

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 Rehabilitation Rehabilitation 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.

An institutional ethnography inquiry of health care work in special education: a research protocol.

BACKGROUND: Special education for children with chronic health conditions or disabilities requires the integration of health care work with education. This phenomenon occurs in an understudied and challenging context for integrated care despite policies and protocols that outline work processes in this context. We are interested in an approach to inquiry that will allow us to address gaps in current literature and practices in integrated care, and move towards informing policy. STUDY DESIGN AND DATA COLLECTION METHODS: Institutional ethnography is an approach to inquiry that maps the actualities of what individuals do at an everyday local level, while examining this work activity in relation to the sociopolitical context. It has been used to change policy and local practice by highlighting disjunctures between policy and actuality. We are adopting institutional ethnography and its three common methods of data collection: document collection, interviews, and observation/shadowing. Informants to this inquiry are chosen from school-based teams, family-centred units and constellations of clinical professionals. METHODS OF ANALYSIS: We are following work processes, verbally and visually mapping what is done and by whom. It is important to note that work includes 'unofficial' work, including the work of families and others who may not be assigned an official work role in a policy or protocol. The mediating role of texts in work processes is also being mapped in order to link the local work to the high-level social coordinators. To begin, analysis focuses on local, or micro-level, work processes; next, analysis identifies and explains the macro-level coordination of the local work (i.e. social and political structures). CONCLUSION: A primary outcome of this study will be the creation of verbal and visual maps that demonstrate the social organisation of work processes occurring in the health care-special education interface. These maps will make invisible work visible, highlight disjunctures between policy and practice and identify opportunities for change. They will be useful for critical knowledge translation purposes, providing parents and professionals with an awareness of how their individual work fits in to the larger picture of integrating health care work in special education.