Inclusive university experience in Australia: Perspectives of students with intellectual disability and their mentors

Philosophy of inclusive post-secondary education

Participation in higher education has positive personal, social and economic outcomes (Hout, 2012; Swain and Hammond, 2011). Several colleges (or universities) in the United States, Canada and Europe have supported the inclusion of people with intellectual disability (ID) in post-secondary education (PSE) since the 1980s (O’Connor et al., 2012; Think College, 2013; Uditsky and Hughson, 2012). Uditsky and Hughson (2012) argued that the philosophy of inclusive PSE is based on the failure of segregated education to deliver positive outcomes for people with ID and changing notions of what constitutes a ‘good life’ for people with disabilities. Inclusive education aims to overcome marginalization and creates educational opportunities that are the norm for other young people (Uditsky and Hughson, 2012).

Despite the philosophy of inclusion, many inclusive PSE programmes are based on models that segregate or partially segregate students with ID from their peers (Uditsky and Hughson, 2012). Three main models of inclusion have been identified: mixed or hybrid models, substantially separate models and inclusive individual support models (Hart et al., 2004, 2006). Mixed or hybrid models are where students with ID have the option to participate in academic classes (for audit or credit) and/or social activities on campus with students without disabilities, while also participating in life skills or transition classes with others with disabilities (Hart et al., 2004, 2006). Substantially separate models involve students with ID participating only in classes with other students with disabilities (i.e. life skills or transition programmes) and may include opportunities for employment experience by rotation through a limited number of employment slots (Hart et al., 2004, 2006). Programmes operating on the inclusive individual support model provide individualized services in college courses, certificate programmes and/or degree programmes for audit or credit (Hart et al., 2006) and may include employment-related support (Hart et al., 2004). These services are based on the student’s choices, vision and career goals (Grigal et al., 2012; Hart et al., 2004, 2006). Furthermore, the inclusive individual support model promotes self-determination (Wehmeyer, 1996) skills because students make their own choices and decisions and identify their own goals (Hart et al., 2006). Support to realize these goals is often facilitated by peer mentors (students without ID) (Jones and Goble, 2012; O’Conner et al., 2012). Mentors are typically pre-service teachers who support positive on campus experiences for students with ID (Conway, 2011). Mentors focus on enhancing academic, social and employability skills of students with ID (Giust and Valle-Riestra, 2016) and contribute to students’ success. Mentoring relationships have been found to be mutually beneficial (Giust and Valle-Riestra, 2016).

Reported outcomes of inclusive PSE

Despite programme variations, inclusive PSE has been shown to deliver positive academic and social outcomes. Positive benefits for students include meeting new people, developing communication skills, building capacity to self-advocate, building self-esteem and confidence, and growing independence (Folk et al., 2012; Hughson et al., 2006; O’Connor et al., 2012). Overall, inclusive PSE promotes the perception that students with ID are more similar to peers without ID than different and increases students’ expectations of themselves and what they can achieve (Hart et al., 2006). Moreover, students with ID have reported similar academic experiences to students without disabilities, such as keeping up with readings, interacting with faculty and ability to perform academically (Plotner and May, 2017). Inclusive PSE also encourages positive attitudes towards students with ID in university communities (Griffin et al., 2012; May, 2012), including supportive faculty (Plotner and Marshall, 2015). Moreover, positive contact and interaction with marginalized groups (e.g. people with ID) can reduce stereotyping and discriminatory behaviours (Allport, 1954; Devine and O’Brien, 2007; Roper, 1990).

However, common challenges to inclusive PSE have been reported, such as inadequate support for students with ID (Jones and Goble, 2012; Mock and Love, 2012). Students’ academic and social experiences can be hampered by low academic expectations and non-inclusive practices of others in the university community (Grigal et al., 2011; Hart et al., 2006; Neubert et al., 2002). Therefore, inclusive PSE programmes need to be regularly reviewed and evaluated in order to optimize students’ experiences and outcomes. Given the variations in programme models (Grigal et al., 2012; Hart et al., 2004, 2006; Plotner and May, 2017; Uditsky and Hughson, 2012), it would be advantageous to have further evidence identifying the benefits and challenges associated with inclusive individual support models.

Inclusive PSE in Australia

Though inclusive PSE for people with ID has existed for around 30 years in the United States, Canada and parts of Europe, it is relatively new in Australia (Centre for Disability Studies, 2013; Grantley, 2000; O’Rourke, 2011). The Australian Disability Standards for Education (Australian Government, 2005) ‘provide a framework to ensure that students with disability are able to access and participate in education on the same basis as other students’ (p. iii). In addition, Article 24 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006) states that people with disability have the right to ‘access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others’. However, people from ‘disadvantaged’ groups are still under-represented or continue to face barriers to participation in Australian higher education (Australian Government, 2016). In Australia, people with an ID are less likely to move into PSE than their same-age peers without disability (6% vs. 12%) (Australian Institute of Health and Welfare (AIHW), 2008). As a result of the policy statement, ‘A Fair Chance for All’ (Department of Employment Education and Training (DEET), 1990), access and equity for students with various disabilities in Australian universities were improved. However, people with ID were not included in the range of people with disabilities accessing university (Andrews, 1991, cited in Grantley, 2000). This lack of access to university may in part be because post-school options for people with ID typically focused on vocational outcomes, though young people with ID indicated that they also needed support with community and social skills, such as making friends (Parmenter and Knox, 1991).

A pilot study at Flinders University attempted to address these identified support needs by providing inclusive PSE opportunities for people with ID as auditing students (Gibson, 1997). Auditing students attend lectures on a chosen topic (also known as subject/unit/course/component/module) of interest and do not undertake assessments or examinations for the purpose of completing the degree award. The pilot was based on PSE university programmes in Canada (Hughson et al., 2006) and Finland (Saloviita, 2000). It aimed to ensure an ‘authentic student experience’ (Uditsky and Hughson, 2012) of having students with ID in the same classes as peers without ID. The pilot study found that people with ID who audited a topic over one academic semester (4–5 months) formed relationships with peers and developed an understanding of the norms of the class (Gibson, 1997). Following the pilot, it was recommended that the inclusive programme be implemented (Grantley, 2000). This programme is known as the Up the Hill Project (UTHP).

The Up the Hill Project

The UTHP, established in 1999 (Flinders University, 2016), aligns somewhat with the inclusive individual support model (Hart et al., 2006); however, student goals are not necessarily career focused. The UTHP currently receives state government funding. However, in future, participants in Australia’s National Disability Insurance Scheme (NDIS) (NDIA, 2016) may choose to use their individualized funds to be supported to attend university through a programme such as the UTHP.

The UTHP promotes self-determination skills by enabling students to choose a university topic of interest to audit each semester and set and review individual semester goals. Individual goals based on personal preference may be associated with making friends, using the library, writing an assignment or using the university bus. Auditing students attend lectures and may choose other social and academic activities as well (e.g. participate in class discussions or assessments, and presentation days). A certificate of recognition is awarded on completion of six academic semesters (3 years). The certificate is presented at the university graduation ceremony.

The mean age of students who have participated in the project since it commenced is 32 years (range: 19–66 years) (Rillotta et al., 2014). Topic areas that students have chosen to audit include Disability, Visual Arts, History, Sociology, Politics, Australian Studies, Drama, Criminal Justice, Screen and Media, Health and Physical Education and Computer Science. Topic choices are up to individual preferences and interests, as well as subject to availability and lecturer approval.

Students in the UTHP are supported by peer mentors. Peer mentors are students without ID undertaking work experience placements as part of their studies to become disability professionals, teachers or other human service professionals. Peer mentors are supervised by the UTHP Coordinator and provide individual support based on the goals and choices of the student with ID. Mentors attend university classes with auditing students to facilitate learning. Peer mentors support social inclusion by encouraging students with ID to interact with peers inside and outside the classroom and to participate in group discussion and activities. Peer mentors also introduce people in their network to the students with ID to initiate connections and relationships. Peer mentors may choose to engage in social activities such as attending parties, shopping or going to the cinema with students with ID, even though it is not a requirement of their placement. Peer mentors build rapport with the student they mentor to ascertain interests and then facilitate access to relevant university activities and facilities such as student clubs and societies. They will also go to the university eateries, study spaces and library together and support the student with ID to learn how to get to these locations and use the facilities.

Positive outcomes such as learning about different topics, increased self-esteem, self-confidence, independence, social skills and social networks (e.g. enjoyed meeting new people) were reported shortly after the UTHP was established (Lobban, 2002). The UTHP is the longest standing project of its kind in Australia, but it has no recent evaluation or robust evidence of its value from the perspectives of auditing students and mentors.

Despite other programmes of inclusive PSE now established nationally (e.g. uni 2 beyond, Centre for Disability Studies, 2013, 2016), there has been little research evidence within Australia about the benefits of inclusive PSE for people with ID. The UTHP is currently one of two inclusive PSE programmes in Australian Universities. The other programme in Australia (uni 2 beyond, Centre for Disability Studies, 2016), established in 2012, is similar to the UTHP in that students with ID attend lectures and tutorials of their choice as audit students, supported by peer mentors. Evaluation of the UTHP and other similar Australian programmes is particularly important because the inclusive individual support model of PSE that they represent is one of the least common PSE models internationally (Grigal et al., 2012; Hart et al., 2004, 2006). Yet inclusive individual support models are likely to represent ‘full inclusion’ informed by the social model of disability and a moral imperative as argued by Uditsky and Hughson (2012). Moreover, given that Australia’s NDIS will help people with disability to achieve their education goals (NDIA, 2016), evidence is needed to promote best practice in supporting people with ID to attend Australian universities. The current research explored the following research question: What are the experiences of participating in an inclusive university programme for students with an ID? The aims of the research were to (1) investigate the expectations and experiences of auditing students with ID and (2) explore mentors’ perceptions and opinions of the university experience for auditing students.

Ethics

Ethics approval was obtained from the university’s Social and Behavioural Research Ethics Committee (project number: 6154). Participants provided written consent for their participation. Eligibility criteria for the UTHP require students to independently express a desire to attend university, thus demonstrating capacity to provide independent informed consent.

One of the authors is the Program Advisor of the UTHP. All other authors are not involved in the UTHP in any capacity. The Program Advisor of the UTHP did not recruit participants or collect data but supported data analysis with the Research Assistant (RA), who was independent of the UTHP. This ensured that the Program Advisor’s position did not unduly influence research outcomes.

Design

This qualitative research collected data using semi-structured interviews at two time points, 4–5 months apart, to capture expectations (start of academic semester) and experiences (end of academic semester). Semi-structured interviews have been successfully used to capture the perspectives of people with ID (Kroll, 2011; Ruddick and Oliver, 2005). The flexible format of semi-structured interviews ensures that the interesting avenues of information presented during the interview can be fully explored (Rapley, 2004).

Participants

All participants in the UTHP at the time were invited to participate in the research and all possible participants agreed to participate. There were two groups of participants.

Procedure

The UTHP Coordinator (not on the research team) provided information sheets and consent forms to all students and mentors who then posted their consent form to the RA. A mutually convenient time and location (quiet, private room at the university campus) was arranged for the RA to meet with the participants to explain the study further, conduct the interview and arrange the second interview.

Interviews were conducted once at the beginning and once towards the end of the academic semester (4–5 months). Each interview lasted no longer than one hour. Participants consented to audio recording of interviews to enable verbatim transcription. Interview questions were slightly different for students and mentors because, as emphasized in the literature, it is important to consider cognitive ability and communication skills of people with ID when interviewing (Corby et al., 2015). Therefore, the interview schedules were targeted towards the participants and used simple, accessible language with a combination of open and closed questions. Student interview questions were designed to capture the students’ perspectives on their own experience. Mentor interview questions were aimed at gathering their perspective on inclusive practices for the person they mentored. Student and mentor interview questions were designed to answer the research question and aims about the overall experience for students with ID, and therefore were analysed together.

Data analysis

Interview data were transcribed verbatim by the RA to develop strong familiarity with the data. Interview data of both groups were coded into themes and subthemes using thematic analysis (Boyatzis, 1998; Braun and Clarke, 2006). Student and mentor data were analysed together in order to best address the research question about the overall experience of inclusive university. This method was considered most appropriate because the data were participant driven and shaped according to individual interview responses. In order to strengthen analytical rigour, two of the authors analysed and coded the data separately to develop themes and subthemes, and then a second and third round of coding was undertaken where both researchers collaborated to check accuracy and finalize themes.

Self-determination

Social development

Inclusive practices

Intellectual development

Social development: Challenging the perceptions of peers

Auditing students described having had opportunities to socialize and expand their social networks. This is consistent with the previous literature reporting that inclusion of students with ID resulted in meaningful interactions with peers (Jones and Goble, 2012; O’Connor et al., 2012); however, social interaction was found to be predominantly with peer mentors at the university. This finding echoes Plotner and May’s (2017) finding that students with ID were less likely than students without disabilities to spend time with friends outside the institution.

As Jones and Goble (2012) found in their research into mentors in inclusive education programmes, the UTHP mentors most likely already had positive attitudes towards students with ID and were supportive of inclusive educational practices. These attitudes are likely due to the mentors studying to be disability professionals. However, contrary to the previous literature which suggested that inclusive PSE encourages positive attitudes in university communities (Griffin et al., 2012; May, 2012), there is less evidence of such positive attitudes in the current findings. Furthermore, increased awareness that learning difference does not mean incompetence (Jones and Goble, 2012; O’Connor et al., 2012) was not necessarily evident. Even though previous research found that contact with ‘marginalized’ people (e.g. students with ID) reduced stereotyping and discriminatory behaviour (Allport, 1954; Devine and O’Brien, 2007; Roper, 1990), there was evidence that many peers discriminated against auditing students based on disability. Mentors reported that they needed to challenge the perceptions of peers and identified that part of their role was to redirect conversation to include auditing students because peers spoke to mentors instead of directly to the students. Unfortunately, this aligns with Lobban’s (2002: 157) findings from around 14 years ago that ‘non-disabled students would look to the mentor for interaction’, implying there has been little development in awareness and attitudes of others. These findings provide further evidence that more disability education and awareness is required for mainstream university students, particularly in terms of communicating with people with ID.

Inclusive practices: Need for lecturer education

Mentors commonly reported mixed experiences of inclusive practices by university staff. As noted previously, the perspectives of mentors may have been influenced by their existing expectations of social inclusion based on their studies (Jones and Goble, 2012). Mentors were more informed, aware of and educated about – and hence critical of – inclusive practices. Mentors noted that lecturers had varying skills in inclusive practices. Some practices, such as not including the auditing student with ID in groups, were noted to present a barrier to successful inclusion. Since the main focus of the current study was to explore the experiences of the students and their mentors, lecturer perspectives were not investigated. Therefore, it remains unknown whether these practices are associated with the negative attitudes of lecturers or a lack of understanding and awareness (or both). Consistent with Jones and Goble (2012: 276), lecturers may need training ‘related to the provision of accommodations’ to include people with ID in their classes. In order to identify specific training needs, future research should develop upon research by O’Connor et al. (2012) investigating existing awareness, attitudes, skills, knowledge and perspectives of university teaching staff (e.g. lecturers and tutors).

Intellectual development: Recognizing potential for further education

Higher education is valued because it enables development of academic knowledge and skills, as well as personal growth (Hout, 2012; Swain and Hammond, 2011). Based on the principle of self-determination (Wehmeyer, 1996), students were supported to make choices while at university, speak up, independently navigate the university campus and ask for help. Students with ID participating in the UTHP developed academic knowledge and demonstrated intellectual growth because of their participation in university topics. Topic-specific knowledge and social skills gained from inclusion in higher education programmes such as the UTHP may provide individuals with ID a transition pathway to further education (e.g. enrol in a university degree of their choice and work towards a formal qualification) or desirable skills for future employment. The programme therefore fills an educational gap for people with ID who may not have previously had opportunity to attend university because of additional support needs (AIHW, 2008) or may not have had their potential recognized within higher education contexts.

Even though participants identified several positive points, one major area for future development for the UTHP (and other similar programmes) to consider is whether providing opportunities for students with ID to audit university topics is a completely inclusive practice. Arguably, the fact that auditing students do not receive a university qualification is limiting and reiterates previous assumptions of low academic expectations (Grigal et al., 2011; Jones and Goble, 2012). Even though the results demonstrated the personal and intellectual development of the auditing students, the outcomes are not necessarily the same as the mainstream students who receive a formal qualification, potentially providing greater employment opportunities. Future research should build upon that of Plotner and May (2017) to compare the outcomes of university for students with ID to their peers without ID. Further research is also required to explore the transition of auditing students who have completed the UTHP to examine whether personal benefits continue beyond their time at university. It should also build upon Moore and Schelling’s (2015) research to investigate whether improved employment rates for people with ID who participated in PSE programmes are similar in an Australian context.

Summary of recommendations

In summary, the current research recommends that university lecturers have opportunities for training around inclusive practices. Such training could specifically relate to supporting inclusion of students with ID to reduce barriers to learning and inclusion. A recommended next step for future research is to gain the perspectives of lecturers and university teaching staff. Similarly, it is recommended that further disability education is required within mainstream higher education in order to embed positive communication, awareness and inclusion of people with ID among peers. Future research should also explore the attitudes and opinions of peers in the university community. Importantly, inclusion in PSE programmes in Australia such as the UTHP should be acknowledged as a viable stepping stone for people with ID to further education or employment.

Limitations

While this study highlighted a number of benefits and made recommendations for future development of inclusive PSE for people with ID, the following limitations are noted. First, even though all students from the UTHP participated, there was a small sample size for both auditing students and mentors limiting the generalizability of results. Second, even though mentors elaborated on the auditing students’ often briefer accounts, mentors’ perspectives were over-represented relative to the perspectives of the auditing students themselves. Therefore, mentors’ voices may be amplified in the current findings, particularly under the Inclusive Practices theme. Third, it was difficult to gauge individual growth and development over a single semester (4–5 months) because intellectual and social development, and time to reflect on that development, may take longer. Future longitudinal research should collect data over a longer period using a pre/post design, interviewing participants before they first commence at university in order to measure the outcomes throughout their 3 years with the programme. Finally, it was not possible within the scope of the current study to interview lecturers. Since there is limited research in Australia about inclusive PSE, the main aim of the current research was to capture the experiences of students with ID and their mentors in the first instance. The current findings highlight the diverse experiences (positive and negative) of inclusive practices and the current themes can be used to inform future research investigating lecturer perspectives.