The familiar and the strange: the limits of universal design in the European context

Keynote Presentation paper

Issues in the prescribing of psychotropic and psychoactive medication for persons with learning disability: quantitative and qualitative perspectives

The administration of psychotropic and psychoactive medication for persons with learning disability and accompanying mental illness and/or challenging behaviour has undergone much critical review over the past two decades. Assessment and diagnosis of mental illness in this population continues to be psychopharmacological treatment include polypharmacy, irrational prescription procedures and frequent over-prescription. It is clear that all forms of treatment including non-pharmacological interventions need to be driven by accurate and appropriate diagnoses. Where a psychiatric diagnosis has been identified, it greatly aides the selection of appropriate medication, although a specific medication for each diagnosis, as was once hoped, is simply no longer a reality in practice. Part one of the present thesis seeks to address many of the current issues in mental health problems and pharmacological treatment to date. The author undertook a drug prevalence study within both residential and community facilities for persons with learning disability within the Mid-West region of Ireland in order to ascertain the current level of prescribing of psychotropic and psychoactive medications for this population. While many attempts have been made to account for the variation in prescribing, little systematic and empirical research has been undertaken to investigate the factors thought to influence such prescribing. While studies investigating the prescribing behaviours of General Practitioners (GP's) have illustrated the complex nature of the decision making process in the context of general practice, no similar efforts have yet been directed at examining the prescribing behaviours of Consultant Psychiatrists. Using The Critical Incident Technique, the author interviewed Consultant Psychiatrists in the Republic of Ireland to gather information relating not only to their patterns of prescribing for learning disabled populations, but also to examine reasons influencing their prescribing in addition to several related factors. Part two of this thesis presents the findings from this study and a number of issues are raised, not only in relation to attempting to account for the findings from part one of the thesis, but also with respect to implications for improved management and clinical practice.

Inclusive education policy, the general allocation model and dilemmas of practice in primary schools

Background: Inclusive education is central to contemporary discourse internationally reflecting societies’ wider commitment to social inclusion. Education has witnessed transforming approaches that have created differing distributions of power, resource allocation and accountability. Multiple actors are being forced to consider changes to how key services and supports are organised. This research constitutes a case study situated within this broader social service dilemma of how to distribute finite resources equitably to meet individual need, while advancing inclusion. It focuses on the national directive with regard to inclusive educational practice for primary schools, Department of Education and Science Special Education Circular 02/05, which introduced the General Allocation Model (GAM) within the legislative context of the Education of Persons with Special Educational Needs (EPSEN) Act (Government of Ireland, 2004). This research could help to inform policy with ‘facts about what is happening on the ground’ (Quinn, 2013). Research Aims: The research set out to unearth the assumptions and definitions embedded within the policy document, to analyse how those who are at the coalface of policy, and who interface with multiple interests in primary schools, understand the GAM and respond to it, and to investigate its effects on students and their education. It examines student outcomes in the primary schools where the GAM was investigated. Methods and Sample The post-structural study acknowledges the importance of policy analysis which explicitly links the ‘bigger worlds’ of global and national policy contexts to the ‘smaller worlds’ of policies and practices within schools and classrooms. This study insists upon taking the detail seriously (Ozga, 1990). A mixed methods approach to data collection and analysis is applied. In order to secure the perspectives of key stakeholders, semi-structured interviews were conducted with primary school principals, class teachers and learning support/resource teachers (n=14) in three distinct mainstream, non-DEIS schools. Data from the schools and their environs provided a profile of students. The researcher then used the Pobal Maps Facility (available at www.pobal.ie) to identify the Small Area (SA) in which each student resides, and to assign values to each address based on the Pobal HP Deprivation Index (Haase and Pratschke, 2012). Analysis of the datasets, guided by the conceptual framework of the policy cycle (Ball, 1994), revealed a number of significant themes. Results: Data illustrate that the main model to support student need is withdrawal from the classroom under policy that espouses inclusion. Quantitative data, in particular, highlighted an association between segregated practice and lower socioeconomic status (LSES) backgrounds of students. Up to 83% of the students in special education programmes are from lower socio-economic status (LSES) backgrounds. In some schools 94% of students from LSES backgrounds are withdrawn from classrooms daily for special education. While the internal processes of schooling are not solely to blame for class inequalities, this study reveals the power of professionals to order children in school, which has implications for segregated special education practice. Such agency on the part of key actors in the context of practice relates to ‘local constructions of dis/ability’, which is influenced by teacher habitus (Bourdieu, 1984). The researcher contends that inclusive education has not resulted in positive outcomes for students from LSES backgrounds because it is built on faulty assumptions that focus on a psycho-medical perspective of dis/ability, that is, placement decisions do not consider the intersectionality of dis/ability with class or culture. This study argues that the student need for support is better understood as ‘home/school discontinuity’ not ‘disability’. Moreover, the study unearths the power of some parents to use social and cultural capital to ensure eligibility to enhanced resources. Therefore, a hierarchical system has developed in mainstream schools as a result of funding models to support need in inclusive settings. Furthermore, all schools in the study are ‘ordinary’ schools yet participants acknowledged that some schools are more ‘advantaged’, which may suggest that ‘ordinary’ schools serve to ‘bury class’ (Reay, 2010) as a key marker in allocating resources. The research suggests that general allocation models of funding to meet the needs of students demands a systematic approach grounded in reallocating funds from where they have less benefit to where they have more. The calculation of the composite Haase Value in respect of the student cohort in receipt of special education support adopted for this study could be usefully applied at a national level to ensure that the greatest level of support is targeted at greatest need. Conclusion: In summary, the study reveals that existing structures constrain and enable agents, whose interactions produce intended and unintended consequences. The study suggests that policy should be viewed as a continuous and evolving cycle (Ball, 1994) where actors in each of the social contexts have a shared responsibility in the evolution of education that is equitable, excellent and inclusive.

Becoming a father of a child with an intellectual disability- a narrative inquiry of Irish fathers’ stories

Background: This thesis explored men’s experiences of becoming a father of a child with an intellectual disability in the early years. In Ireland, it is estimated that there are almost 97% (n= 9,914) children with intellectual disabilities living at home in the care of parents, siblings, relatives or foster parents. While mothers and fathers are the primary caregivers, mothers’ experiences are well documented in comparison to the dearth of reports on fathers’ experiences. This descriptive narrative study aims to redress this gap in knowledge and understanding of men’s experiences of becoming a father of a child with an intellectual disability in the early years. Method: Narrative inquiry was employed for this study as it allows stories told by fathers to be collected as a means of exploring men’s transition to becoming a father of a child with an intellectual disability. A sample of 10 fathers of children with intellectual disabilities aged between thirteen months and five years of age were recruited from a large intellectual disability Health Service Provider (HSP) in the South of Ireland. Data were collected through semi-structured interviews which were audio-recorded, transcribed, and analysed using a narrative thematic approach. Findings: Findings are presented in four themes: i) ‘becoming a father’, ii) ‘something wrong with my child’, iii) ‘entering the world of disability’ and iv) ‘living a different life’. For all 10 fathers the time of being told that their child had an intellectual disability was laden with negative emotional responses irrespective of whether the diagnosis was at birth or more gradual over the child’s early developmental period. When fathers found out that ‘something was wrong’ they spoke of ‘moving on’ and entering the world of disability. In their narratives, becoming the father of a child with an intellectual disability had changed their lives and would inevitably change their futures. Fathers’ positivity was clearly evident with many fathers identifying that the diagnosis of their child with an intellectual disability was not a life ending event but rather a life changing event. Conclusions: Healthcare professionals have a critical role in supporting fathers during the transition to becoming a father of a child with an intellectual disability. Factors which require consideration include recognising that each father’s experience is unique; that fathers require support; and that fathers achieve personal growth because of their experiences of their transition to becoming a father of a child with an intellectual disability in the early years.

The Shawlies: A study of early neoliberal ‘gender-fication’. The Street Trading Act, 1926, modern gender-fication, and the implications for Cork’s women street traders

For centuries Cork’s Shawlies, working-class women, survived by trading on public streets. My study explores how the first Irish Free State government, and Cork’s local authority, limited the rights of poor women to earn by subsistence trading with The Street Trading Act, 1926. The government insisted this would regulate street trading. In practice it further marginalised the women economically and socially, containing them outside the privileged, commercial city centre. In Cork the legislation facilitated the gradual disappearance of the Shawlies amid entrenched social processes and relations, contingencies that allowed for the abuse of their rights in the service of amalgamated business interests. This study address the role of discourses in deepening this marginalisation. My theoretical framework is designed to demonstrate how a seemingly innocuous piece of legislation would, in practice, do this. I set out the concepts of ‘Thriving State’, ‘Prosperous State’, and state of ‘Best Intentions’ that uses gentrification to meet these goals. The existing knowledge on women in trade is then examined, highlighting the gaps in what is known about the Shawlies. Chapter 3 details the theory behind my genealogical method. The legislation, debate, and other data produced at the national level is then examined, before moving to the local data. Chapter 6 is devoted to the Shawlies, setting their stories in the larger context of the debates. An examination of studies of contemporary women street traders in poor nations follows, along with a brief history of the decline of street trading in New York city under gentrification. Points of convergence between that process and the one in Cork are identified, along with convergences between contemporary traders and the Shawlies. The conclusion sets out my methodological, theoretical and substantive discoveries, and comments on current nostalgic renderings of the Shawlies in Cork’s newly gentrified Corn Market Street.

The Protection of Life During Pregnancy Act 2013: Suicide, dignity and the Irish discourse on abortion

Accepted Version