ALBERTA ASSOCIATION FOR COMMUNITY LIVING E. ANNE HUGHSON, SHEENA MOODIE AND BRUCE UDITSKY 1 Alberta Association for Community Living The Story of Inclusive Post-Secondary Education in Alberta Final Research Report 2004-2005 Written by E. Anne Hughson Sheena Moodie Bruce Uditsky Funding provided by Persons with Developmental Disabilities Provincial Board, Alberta Seniors and Community Supports 2 Acknowledgements The research was possible because a devoted number of people are committed to examining the possibilities and challenges of Inclusive Post Secondary Education. The members of the Research Steering Committee (all members of the Alberta Association for Community Living Inclusive Post-Secondary Education Network) are very grateful to everyone who took the time to talk to each other and to the researcher, Sheena Moodie, who interviewed many people, collated many sources of data and provided a clear organizational framework for the final report. Thank you to the facilitators in each of the six initiatives, the parents, the students, the alumni, the faculty and instructors, the institutional administrators and the mentors who generously shared their experiences of being part of an inclusive post secondary education for young adults with developmental disabilities. Thank you to Patricia Bowman, co-chair of the Adult Education Network (AACL) for her support and contribution to ensuring the completion of the project. A special thanks to Sheena Moodie for being a researcher par excellence. Thank you to the Alberta Provincial Board of Persons with Developmental Disabilities and the support of Tim Weinkauf, PDD Community Research Program. 3 Table of Contents Page Title ………………………………………… 1 Acknowledgements…………………….. 2 Section I Research Purpose……..…... 4 Section II Research Scope……..……... 12 Section III Research Activities……….. 16 Section IV Results…………………….... 26 Section V Analysis & Interpretation… 68 Section VI Conclusions……………….. 95 Tables……..……………………………… 106 Appendices……………………………… 114 References………………………………. 150 4 The Story of Inclusive Post Secondary Education in Alberta SECTION I Research purpose In Alberta, inclusive post-secondary education initiatives began almost twenty years ago with a few Edmonton parents who had a vision for their sons and daughter with developmental disabilities. These dreams have become a reality for a growing, but still small number of adults in colleges and universities across the province and in few other places in Canada. More and more parents and their children are interested in pursuing a range of inclusive post-secondary education opportunities just like other young adults who begin to explore their career options and take their place as adults in the community. Unique practical information and personal experience with inclusive post-secondary education has accumulated in Alberta. It is essential that this knowledge be captured, interpreted and disseminated to families and other advocates intent on pursuing and expanding inclusive learning and participation in community life. This project was designed to document and analyze the principles, models, experiences, successes and challenges as described by students, families, facilitators and post-secondary institutions. It is also an objective of the project to present this accumulated knowledge in other accessible formats. In that these inclusive post-secondary education initiatives exemplify the vision, mission and values of inclusion as articulated by the PDD Provincial and Community Boards, their funding and support has afforded more students the opportunity to participate each year. When individuals with developmental disabilities are welcomed into the campus life of post-secondary institutions across the province, new pathways to inclusion are forged. The stories of young adults who have developed and pursued career interests, contributed to the learning environment of the post-secondary, formed friendships, continued their learning into adulthood, participated in recreational, social and cultural activities and increased their employment prospects, must be told. It is our hope that the qualitative, participatory research approach undertaken not only does justice to capturing the experiences, interpreting the findings and analyzing the phenomenon but also advances the availability of high quality inclusive education to many more individuals with developmental disabilities. Significance Almost twenty years of experience supporting individuals with developmental disabilities to be included in colleges and universities, has resulted in a substantial number of students, peers, faculty, facilitators, families and employers who can describe and explain the value of inclusive post-secondary education. In addition, there are now a significant number of students who have ‘graduated’ from both colleges and universities. Collecting 5 information about student employment, living arrangements, social life and other contributions to the community offers an important reflection on the impact of attending colleges and universities, as well as providing an in-depth guide to understanding what critical factors influence the experiences of students, families, faculty and employers in both small and larger communities. At the time of the implementation of this research, there were post-secondary initiatives in colleges and/or universities in Edmonton, Calgary, Red Deer, Lethbridge, and Olds. New post secondary institutions, including the first technical institute, were either under discussion or just beginning in Edmonton, Calgary, Grande Prairie, Lloydminster, and Fort McMurray. Literature Review Traditionally young adults with developmental disabilities have not been given the opportunity to participate in post-secondary education, even while most young adults today believe that post-secondary experience is essential to gaining reasonable employment with career potential. Post-secondary education is considered a highly valued pursuit in our culture. It is highly respectable for young adults to be seen as students in college or university, meeting new people, pursuing studies of interest, making relationships with those who offer employment potential, experimenting and maturing in an educational context. The proportion of students with disabilities enrolled in and graduating from Canadian universities and colleges, as well as the overall educational attainment of people with disabilities, increased throughout the 1990’s (HRDC 2000). People with disabilities in Canada who graduate from universities and colleges are more likely to participate in the labor force and be employed than people with disabilities who have lower levels of education (Roeher, 1992; HRDC 2000; Statistics Canada 1993). However, the same educational opportunities and outcomes have not been realized for adults with developmental disabilities who are not academically eligible for colleges and universities. Theories, Discourse and Findings As most studies continue to report, the employment picture for students with developmental disabilities who graduate from high school (most often from segregated special education classes) is not optimistic. In general, follow up studies over the last 15 years indicate that high school graduates with developmentally disabilities experience are socially isolated, unemployed or earn wages well below the poverty line (Haring & Lovett, 1990; Blackorby & Wagner, 1996). The major disparity in outcomes and opportunities for adults with developmental disabilities has long been a focus of concern to students, families and advocacy organizations (Roeher, 1996; Uditsky, Frank, Hart & Jeffery, 1988). One avenue for redress has been the exploration of inclusive post-secondary education at both colleges and universities. Some have argued that such an option is a logical extension of educational research that reports the benefits of inclusive education. The overall findings of several classic meta-analytic studies on the positive effects of 6 inclusive education in the primary and secondary grades (Wang, Anderson, & Bram, 1985; Carlberg & Kavale, 1989) point to the logical assumption that inclusion at the tertiary level also seems desirable and necessary. In fact for some time, those involved in initial efforts have argued that inclusive post-secondary education holds promise of a brighter future for young adults with developmental disabilities in the same way as it does for all young adults (Frank & Uditsky, 1988; Uditsky & Kappel, 1988; Mc Donald, MacPherson-Court, Frank, Uditsky & Symmons, 1996; Weinkauf, 2001). A review of current literature gives rise to issues associated with the discourse. The language and terminology adopted by those reporting on inclusive post-secondary education for individuals with developmental disabilities is revealing. Closer inspection of documented projects/initiatives invites both a clarification of terms and challenges us to analyze the underlying beliefs, assumptions and principles reflected by the language of choice. First, it is clear that a number of different terms are used to describe the educational activities that adults with developmental (intellectual) disability engage in after exiting the secondary school system. The terms most frequently used in the literature include: adult education, further education, tertiary education and post- secondary education. “Post secondary education” in the American context, tends to refer to the education that young adults with an intellectual disability access during their final years of schooling still funded by the public education system and is usually used to describe education received between the ages of 18 and 21 in age-appropriate settings (community colleges, technical schools or universities). Post-secondary education, in this context, is often considered as part of transition planning and other transition related initiatives as a means to help adults with disabilities find meaningful day activities, homes and social recreational pursuits. Tertiary education commonly refers to education received within the university, technical institute or college environment. The term “further education” is commonly used in the British context to describe education that occurs in the university, polytechnic or college environment. “Adult education” is a broad term used to describe education accessed by adults with an intellectual disability during their adult lives, for example adult literacy programs. Generally, the use of the term ‘inclusive post-secondary education’ does not reflect any universal agreement amongst those who report projects in various countries or settings. Another challenge to understanding published research relates to the discourse that describes students with disabilities in the post-secondary or adult education sector. In many studies, adults with an intellectual disability are included in the findings, often part of an ill-defined group of students with a range of labels including those with psychiatric disability, learning disability, physical disability and sensory disability. In Australia and New Zealand intellectual disability is the common term, mental retardation is used in the US and developmental disability is typically applied in Canada, while adults are commonly referred to as people with a learning disability in the British context. The term “learning disability” tends to have a different meaning in the tertiary education literature. Learning disability, in some countries, refers to people who do not (necessarily) have an intellectual disability but do have a specific difficulty with some aspects of learning and may need educational support as a result (for example students with dyslexia). Furthermore, many research articles (particularly in the area of tertiary education) were 7 described as including students with disabilities. This usually meant that the study included adults with physical or sensory disabilities. In spite of the confusion of terms, an examination of reports on the development of inclusive post-secondary education initiatives often appears to follow the rather accepted line of reasoning that dominates special education practice for students with developmental disabilities, that is, the practice of segregation and congregation. The main findings indicate that inclusive post-secondary education efforts are usually predicated on the belief in adult-appropriate transitional planning and transitional related services as an extension of typical special education practice, re-created in a community college settings (Neubert, Moon, Grigal & Redd, 2001; Mirfin-Veitch, 2003). In some US based projects, some students (aged 18-21) are typically seen as eligible for support at community colleges in programs that provide some combination of “life-skills” training and community-based instruction along with employment training. In this model, the vision for including students with developmental disabilities into post-secondary settings appears to be most commonly addressed by creating working contracts between school systems and college (typically education) departments for groups of students rather than creating individual arrangements (Hart, Pasternack, Mele-McCarthy, Zimbrick & Parker, 2004; Hall, Kleiner &Kearns, 2000; Grigal, Neubert, & Moon, 2002). In contrast to the tradition of special (segregated) education, advocates for post-secondary education in Canada, Australia and Finland applied the principles of full inclusion informed by a human rights perspective as well as an understanding of the ‘social model of disability’, a theory that locates the changing character of disability, viewed as an important dimension of inequality, within the social and economic structure and culture of the society in which it is found, rather than in individual limitations. In the few examples reported (Frank & Uditsky, 1988; Uditsky & Kappel, 1988; Mc Donald, McPherson-Court, Frank, Uditsky, & Symons, 1996; Weinkauf, 2001; Grantley, 2000; Saloviita, 2005), these theories guided early efforts of inclusive post secondary education for adults with developmental disabilities. Small groups of parents and advocates who appreciated the hopes of families with an informed recognition of the offensive nature of current conditions and relations and a belief that the possibilities of change were not foreclosed, coupled with insight into the socially constructed nature of disability and heartened by the promise of equality legislation recruited a few students with significant developmental disabilities into postsecondary education settings. Students were reported to be included in a wide range of academic courses and associational life with typical students on college and university campuses. In summary, reported initiatives in some countries advocate for access and while a few projects have been situated in post-secondary settings, few have been fully inclusive. However, the desire for inclusive post-secondary education is growing. Clearly, the expectation for better futures increases and inspires the need for more knowledge and understanding about best practices in the provision of inclusive post secondary education for adults with developmental disabilities. 8 Legal Issues in Education Some writers have taken up a vision for inclusive post-secondary education from a different perspective, arguing that tertiary education is a human rights issue and that for people with developmental disabilities, access must be created and expanded (Boxall, Carson & Docherty, 2004; Roeher, 1996). Such arguments center on the analysis of social structures, processes and ideologies that result in the marginalization and oppression of people identified as having cognitive impairments in contrast to adopting the impairment model (often called the medical model) of disability whereby a person's functional limitations (impairments) are the root cause of any disadvantages experienced and these disadvantages can therefore only be rectified by treatment or cure. These authors theorize that the historical awareness of social structures provides significant insights into the diversity of human existence over time. History, they contend, is both created and recreated by human action and as Giddens (1986) observed, this is 'the double involvement of individuals and institutions’. As such, critical insight derived from historical analysis of biographies of individuals with learning disabilities recognizes disability as a social construction and therefore it means different things in different historical periods and cultural contexts, as reflected in the shift of official categories and their meaning. Terms such as; 'moron’ 'imbecile 'idiot', 'insane’, 'feebleminded’, 'mentally deficient', 'subnormal’, 'mentally handicapped’ and 'learning difficulties’ have been invented, one replacing the other over time (Barton, 2003). These categories have been reflected in the legal, socio-economic and cultural developments and the differential educational policy and service provisions associated with the construction of disability. Historically, people with disabilities have experienced a range of responses in both official and everyday discourses, including fear, hatred, pity, over-protection and patronization. Today, individuals with disabilities, their families and their advocacy organizations are increasingly involved in providing alternative, empowering conceptions in contrast to those ideas that have supported and legitimated segregation in educational policy development, practice and everyday interactions. The striking contrast between the responsiveness and welcoming accommodation of universities, colleges and technical institutes to fully include students with developmental disabilities and the continuing legal and pragmatic struggles to do so in primary and secondary classrooms raises fundamental questions as to why this remains the case. The 1997 Supreme Court of Canada decision in Eaton vs. Brant County Board of Education and the prior 1995 Ontario Court of Appeal decision in the same matter provide an opportunity for a critical analysis of what at lies at the heart of these contrasting experiences. Writing for the Ontario Court of Appeal, Justice Louise Arbour, relied on a critical analysis of the historical devaluation, marginalization and exclusion of individuals with disabilities and the necessity to remedy the same on the basis of a presumption of inherent equality between individuals with and without disabilities. In effect, the Ontario Court of Appeal decision came close to establishing a right to an inclusive or integrated education, although it did not entirely preclude the possibility of involuntary segregation. 9 A decision that might be viewed as analogous to Brown vs. Board of Education, the classic 1954 US anti-segregated schooling decision on the basis of race. It is an established fact that the history of schooling in Canada is marked by deeply held systemic prejudices, many of which continue to manifest themselves today under the same pragmatic guises of the past (Uditsky, 1993). As Skrtic (1995) and others have argued, schools are a reflection of societal and cultural prejudices. In jurisdictions like Alberta it was not until the 1980’s that a right to an education was established for all children with disabilities, and this was strongly contested by those who believed some children with disabilities were uneducable and thus unworthy of any schooling investment. Educability was seen as a pragmatic argument but any such declaration quickly resulted in dehumanization justifying any multitude of discriminatory practices. Given decades of exclusion and segregation since the advent of formal schooling, it is not difficult to understand the challenges inclusive education may present to some schools, educators and publics. The Supreme Court of Canada overturned the Ontario Court of Appeal essentially arguing that in an examination of equality rights and discrimination, disability is not analogous to race, gender or other enumerated grounds because one must take into account the personal characteristics of an individual’s disability to distinguish stereotypical assumptions from fact or truth. Experts, assumed to be acting in the best interest of the child and obviously free of any prejudice, could simply determine which individuals, given the nature of their disabilities, deserved to be included. This pragmatic approach to selection allowed the Court to find that the imposition of involuntary segregation upon a child, and against parental wishes, could be of benefit irrespective of any proof. Inclusive post-secondary education is succeeding and expanding as it relies upon the reasoning evidenced by Arbour while inclusive primary and secondary education remains a challenge because it parallels the reasoning of the Supreme Court. In the first instance, post-secondary institutions rely on the desire of the individual with developmental disabilities to be included and in deciding, often with the support of their family, as to what course of study they wish to pursue. The students are viewed as inherently equal, not in their abilities, but in their personhood – in their desire to learn, to belong, and to succeed. Students are viewed as learners who contribute to the classroom. The pragmatic questions focus on how to help each student succeed, how to best teach - not whether someone should be included or excluded on the basis of the nature of their disability. When the Supreme Court ruled there was a qualitative distinction among some Canadians as to the consideration of their equality rights, it reinforced century old reasoning for the exclusion of students with developmental disabilities. To first consider a person’s individual characteristics and whether as a function of that interpretation others can decide whether that person has equal rights, that is, in this instance whether one can impose segregation and exclusion, is to reaffirm the basis for all discrimination and consequent prejudicial practices. Inclusive post-secondary education, from a moral and pragmatic