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Patricia O’Brien
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Michelle L. Bonati
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Friederike Gadow
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Roger Slee
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As a group of four co-editors, we share a background in working within educational settings that have impacted upon students with intellectual disability. We share a passion for inclusion and full and effective participation of all people with disability within inclusive societies (United Nations, 2006). We have brought to the development of this book our shared beliefs on full inclusion from our respective backgrounds of school based teaching of students with intellectual disability; community service work; university lecturing in teacher education; and educational and disability research. As a group we have: lived in different parts of the world, experienced different legislative changes that have impacted on education for students with intellectual disability; witnessed whether it be in Europe, USA, Australia, New Zealand or Canada, the evolution of inclusion impacting early childhood through to both primary and secondary levels. What we all agree on, however, is that equal educational opportunity starts to diminish as the gates of university settings come into view. To widen the opening of these gates has become our mission. The collaboration on this book has provided us with a way forward to capture the status quo of inclusive opportunities for students with intellectual disability within university settings around the world, validating how these students, lecturing staff, and families have become trail blazers in ensuring that education for all means all, not just those with mathematical and linguistic ability (Gardner, 2006).

The collective wisdom of the many voices heard in this text reminds us of the work of Joseph Campbell (Campbell with Moyers, 1991) who wrote of leaders who chartered unknown territory. He referred to such as the Hero’s Journey. Each author within this book is such a hero, having let go of the historical preconceptions of education for students with intellectual disability ending within the secondary sector. Each author has played a part in evolving the presence of students with intellectual disability within university settings. In keeping with the work of Senge, Scharmer, Jaworski and Flowers (2005), the research, policy and practice of inclusive higher education in this book is aimed at “shifting the field … from re-creating the past to manifesting or realising an emerging future” (p. 14) for students with intellectual disability within university settings.

This book will act as a reader for all stakeholders of inclusion, particularly at the university level. It comprises four parts, the first is that of a philosophical, theoretical and rights based framework of inclusion.

Part 1 Philosophical, Theoretical and Rights Based Framework of Inclusion

In Chapter 1, From institutionalisation to inclusion, Patricia O’Brien and Michelle L. Bonati trace the evolution of educational inclusion across several countries, leading to Article 24, Education, in the United Nations Convention on the Rights of Persons with Disabilities where inclusive education across all sectors, including the tertiary sector is reinforced. Seven elements of how to operationalise inclusion within university settings then leads to a discussion of relational social justice being core to sustaining access to inclusive education as a human right.

In Chapter 2, Widening higher education opportunities for students with intellectual disabilities, Barrie O’Connor, Deborah Espiner and Molly O’Keeffe review structural arrangements within university settings that will impact on the inclusion of students with intellectual disability. These include the structure of academic programs, administration protocols, disability support services, funding and risk management. The chapter argues that such inclusion is dependent upon both student and staff expectations, with transformative staff insights gained from witnessing student competence in action.

In Chapter 3, Setting the scene for people with disability to experience university life, Roger Slee visits the structural, attitudinal and historical barriers that compound access to university education for students with disability. Ableism, as it effects resources, understanding of legislative responsibilities, and the impact of student profiling are explored. The author steers the reader in his final comments away from the impact of neo-liberal competitive individualism to one of hope where the inclusion of students with intellectual disability has the potential to change the fabric and landscape of inclusion at the tertiary level.

Part 2 Evidence-Based Outcomes Arising from Inclusive University Programs across International Boundaries

The second part of the book entitled, Evidence based outcomes arising from inclusive university programs across international boundaries, gives insight into eight programs from across the globe where students with intellectual disability are included within university settings.

In Chapter 4, 30 Years of Inclusive Post-Secondary Education, Anne Hughson and Bruce Uditsky describe how they set up the first fully inclusive university program for students with intellectual disability 30 years ago, which has now spread with government support throughout the province of Alberta. They make a case for students with intellectual disability to experience university life without the typical post school employment preparation, vocational and life skills training. They argue that inclusion within university settings is values driven and needs to be looked upon as a moral imperative for good.

In Chapter 5, Inclusive higher education for people with intellectual disability in the United States, Meg Grigal, Debra Hart and Clare Papay provide a description of the evolution of inclusive higher education in the United States, including recent development efforts, guided by the Higher Education Opportunities Act of 2008, which created a national demonstration program throughout 27 states. A description of the model demonstration projects, called Transition Postsecondary Programs for Students with Intellectual Disabilities, or TPSIDs, is provided, and findings from the National Coordinating Center, charged with evaluating those projects, are presented. Finally, critical issues related to standards of practice, credentialing, and accreditation are addressed, and implications for policy and practice for future development of the field of inclusive higher education are offered.

In Chapter 6, staying within the context of the United States, Developing an inclusive model of postsecondary education for students with intellectual disability, Anthony Plotner, Kathleen Marshall, Chelsea VanHorn Stinnett and Kimberly Teasley outline the CarolinaLIFE program at the University of South Carolina. Students live in traditional dorm-style housing while at University. The purpose of Post School Education (PSE) is also raised, with CarolinaLIFE program planning future employment and living options with students upon their graduation.

In Chapter 7, Meaningful participation and shared ownership in an inclusive university program in Iceland, Guðrún Stefánsdóttir and Kristín Björnsdóttir discuss a model where students who have an intellectual disability and non-disabled students are enrolled in the same Vocational Diploma Qualification at the School of Education at the undergraduate level. The positioning of the program within the university, as well as findings of a study on the efficacy of the program are reported, where the perceptions held by 39 graduated students with intellectual disabilities and 14 lecturers who have taught inclusive college courses are analysed.

In Chapter 8, Scope, challenges and outcomes of an inclusive tertiary university initiative in Australia, Friederike Gadow and Jemima MacDonald discuss the foundations and structure of uni 2 beyond, an inclusive initiative for people with intellectual disability based at the University of Sydney, Australia, which facilitates the participation of students with intellectual disability in both the university’s academic and social life. uni 2 beyond’s approach is based on the values of full inclusion and equal opportunity for all students, as underpinned by the UN Convention on the Rights of Persons with Disabilities (CRPD; United Nations, 2006). Inclusive programs at the university level are limited in Australia, with uni 2 beyond being one of only two such initiatives in the country. The Sydney experience is shared in the hope of advancement of similar programs across Australian university settings.

In Chapter 9, Developing post-secondary education programmes for people with intellectual disabilities at Trinity College, The University of Dublin, Ireland, John Kubiak, Michael Shevlin, Molly O’Keeffe and Natasha Spassiani, outline developments associated with the TCD model of higher education for students with intellectual disability. Its development from a hybrid model to one where students are more integrated into regular university courses is the focus, with students continuing to take out a TCD accredited qualification.

In Chapter 10, Journey “up the hill” through inclusive higher education for people with intellectual disability at a South Australian university, Fiona Rillotta, Lorraine Lindsay, and Parimala Raghavendra, University of Flinders, focus on the history of the Up the Hill program, concerns about access and equity and use of peer mentors. Benefits and outcomes are discussed, including: self-determination (e.g., increased self-confidence/independence); social development (e.g., enhanced social networks/adopting university norms); intellectual development (e.g., knowledge of chosen subject); and inclusive practices (e.g., amongst peers and university staff).

Part 3 The Lived Experience of Being and Becoming a University Student

The third part consists of six chapters associated with the lived experiences of stakeholders in the programs profiled above. These stories are represented through the voices of former students of inclusive tertiary education initiatives, parents of adult children with intellectual disability who have been participating in tertiary education, and lecturers who have taught students with intellectual disability as members of their university courses.

In Chapter 11, Journey “up the hill” to my hopes and dreams, Kerri-ann Messenger, a graduate of the Flinders University, Up the Hill Project, co-produced a chapter with Lorraine Lindsay and Fiona Rillotta, university staff members. Kerri-ann shares her experiences as a university student in Australia.

In Chapter 12, My life as a university student, Stephanie Walker, a graduate of the uni 2 beyond initiative, co-produced a chapter with Jemima MacDonald, a coordinator for uni 2 beyond at the University of Sydney in Australia. Stephanie Walker presents what her life was life before beginning university, her experience as a student, and how this experience impacted her life, including her current employment.

In Chapter 13, Expanding pathways to university, Lumene Montissol, a graduate of University of Massachusetts (UMass) Boston’s Inclusive Concurrent Enrolment program, co-produced the chapter with Amy Cook, a faculty member at UMass. Using an interview style question and answer format, Lumene Montissol discusses her experiences as a university student in the United States. She also shares what her life has been like since finishing her experience at university and her advice for future students with intellectual disability and their parents.

In Chapter 14, My name is Margaret and this is my story, Margaret Turley, a graduate of the Certificate in Contemporary Living (CCL) course in Trinity College Dublin (TCD) in Ireland, shares her experiences of participating in university life. She also discusses the activities she has been involved in after her time at TCD, including returning to lectures, participating in an inclusive research network, and engaging in employment.

In Chapter 15, A conversation with families of young people with intellectual disability for whom the dream of attending university came true, Patricia O’Brien and Ray Murray present the views of parents of students who attend the uni 2 beyond initiative at the University of Sydney. Parents share how their expectations for their children have changed arising from the university experience. They also identify the supports needed to realise their own and their adult children’s dreams.

In Chapter 16, Lecturers’ perspectives on being involved in teaching students with intellectual disability participating in university courses, Michelle L. Bonati co-produced this chapter with University of Sydney lecturers, Bruce Chapman, Josh Stenberg, Lorraine Towers, and Thea Werkhoven. The authors discuss their experiences teaching courses that involved a student with an intellectual disability from the uni 2 beyond initiative.

Part 4 Critical Issues Associated with the Further Development of Post Secondary Education for Students with Intellectual Disability

In Part 4, the critical issues that have surfaced in Parts 2 and 3 are the focus of separate chapters.

In Chapter 17, What comes next? Sustaining outcomes post-university, Niamh Lally, Patricia O’Brien, and Robert Gilligan examine the learnings associated with the outcomes for students with intellectual disability who experienced a university education. The authors also discuss the need to plan for post-university transition support and inclusive outcomes from the outset of tertiary initiatives.

In Chapter 18, Counsellor roles in postsecondary transition from school to university, Amy Cook, Laura Hayden, and Felicia Wilczenski discuss the content knowledge, counselling skills, and resources that counsellors need to assist the transition of youth with intellectual disability from secondary school to tertiary education.

In Chapter 19, Inclusive tertiary education through universal design for learning and service-learning, Michelle L. Bonati presents two strategies for university lecturers to design instructional environments that meet the diverse learning needs of students with and without disabilities. The first strategy involves applying the principles of Universal Design for Learning during curriculum planning and instruction. The second strategy includes implementing inclusive service-learning, a teaching method that aligns with the Universal Design for Learning framework.

In Chapter 20, Transition from university to employment, Vivienne Riches, Friederike Gadow, and Jemima MacDonald discuss transition strategies associated with moving from university study to inclusive employment. The transition taxonomy proposed by Kohler and Field (2003) is adapted to discuss evidence-based practices that have been found to be effective to support young adults with intellectual disability.

In Chapter 21, Exploring the growing edges of inclusion, John O’Brien discusses two different mindsets for inclusive tertiary education initiatives. These include a program implementation mindset and an explorer mindset, with each impacting the growth at the edges of inclusion. These mindsets contrast the approaches for managing the myriad of practical everyday tasks and decision-making involved in successfully implementing a tertiary education initiative. Opportunities also are presented that can develop relationships that impact the vision and operational approaches of universities toward inclusive policies and practices.

In Chapter 22, Moving from rhetoric to reality, the editors, Patricia O’Brien, Michelle L. Bonati, Friederike Gadow, and Roger Slee synthesise the themes of the book and propose calls to action with specific tasks to move the rhetoric of human rights into reality for adults with intellectual disability through an inclusive tertiary education.

Terminology

This book was written by contributing authors from around the world. For each chapter of the book, the contributing authors used the form of English spelling conventions (i.e. American English or British/Australian English) that represents their background.

Reflecting on the Way Forward

Much can be learned from reading the chapters in this book and in keeping with Joseph Campbell’s concept of leaders being heroes; we invite you all to reflect on the overall message of this book, inclusion for all and to champion the cause wherever your influence lies. We hope you enjoy the journey through the 22 chapters that follow, charting new territory as you go, for your own involvement in advocating for the inclusion of students with intellectual disability within university settings.

References

  • Campbell, J., & Moyers, B. (1991). The power of myth. New York, NY: Anchor.

  • Gardner, H. (2006). New horizons in theory and practice. Jackson, TN: Ingram Publisher Services.

  • Kohler, P., D., & Field, S. (2003). Transition-focused education: Foundation for the future. The Journal of Special Education, 37, 174183.

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  • Senge, P., Scharmer, O., Jaworski, J., & Flowers, B. S. (2005). Presence, exploring profound change in people, organizations and society. London: Nicholas Brealey Publishing.

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  • United Nations. (2006). Convention on the rights of persons with disabilities. New York, NY: UN General Assembly.

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