“Nothing Separate”: Understanding Why Students With Intellectual Disabilities Choose Inclusive Post Secondary Education

Abstract

Through the creation of and increasing adoption of Inclusive Post Secondary Education (IPSE) programmes, more students with intellectual disabilities are now enroled in colleges and universities than ever before (Blumberg et al. 2008; Grigal and Hart 2010; Think College 2024). IPSE programmes not only provide a pathway to colleges for students with intellectual disabilities who may otherwise not meet standard admission requirements (e.g., ACT/SAT scores, high school diploma requirements) but also provide levels of support unavailable to matriculated¹ college students (e.g., modified course work). While levels of inclusivity (e.g., ability to take standard courses and live in dorms alongside matriculated peers) vary from programme to programme, each of these approximately 337 IPSE programmes (Think College 2024) enable students with intellectual disabilities to access college and university experiences which otherwise would be inaccessible to them. While higher education was previously inaccessible, many students with intellectual disabilities and their families are now planning for college as an expected next step after high school. Students who previously would have had a single college to apply to now have the opportunity to receive numerous acceptances to various colleges via IPSE programmes. This demonstrates a shift in the decision-making power to the student and their families rather than solely institutions. It must be noted, however, that despite these gains, only 2% of students with intellectual disabilities currently attend college and less than 6% of colleges in the United States have IPSE programmes (Gill and Myers 2023; Think College 2024).

The growth of the field of IPSE is not confined to increasing programme availability but includes increase of research on, about, and with IPSE students, community, and professionals. This increase in the number of IPSE programmes and number of students applying to IPSE programmes should be unsurprising given the breadth of research which indicates their benefits. Existing literature indicates a range of benefits for individuals with intellectual disabilities who have completed IPSE programmes. Post-IPSE outcome data indicates that individuals are more likely to be competitively employed and earn higher wages (Butler et al. 2016; Carnevale and Desrochers 2003; Grigal et al. 2011; Grigle et al. 2024; Marcotte et al. 2005; Prince and Jenkins 2005). Beyond the benefit of increased rates of competitive employment, research also shows that having completed an IPSE programme correlates to increased levels of self-determination (Alqazlan et al. 2019; Grigle et al. 2024; Ju et al. 2017), higher levels of confidence (Alqazlan et al.2019; Grigle et al. 2024; Ju et al. 2017; Stefánsdóttir and Björnsdóttir 2016), and have a greater number of friends with and without disabilities (Alqazlan et al. 2019; Cranston-Gingras et al. 2015; Grigle et al. 2024).

Beyond the benefits to individuals who have participated in IPSE programmes, existing literature explores a wide range of topics including but not limited to factors of successful transition planning from K-12 education to IPSE (see Alqazlan et al. 2019; Grigal et al. 2011; Thoma and Wehman 2010; Wagner et al. 2007; Wehman 2010), perspectives of parents of students with intellectual disabilities (see Dwyre et al. 2010; Graff et al. 2019; Grigal et al. 2011; Grigal and Neubert 2004), perspectives of college and university faculty (see Almutairi et al. 2021; Blumberg et al. 2008), and perspectives of peers and mentors without intellectual disabilities (see Harrison et al. 2019; Izzo and Shuman 2013; Smith Hill et al. 2024; Wilt and Morningstar 2020). Despite this breadth of research topics and increasing amount of existing literature, research rarely puts those whom it impacts most directly at the centre—students with intellectual disabilities in IPSE programmes (Vroman 2019). In this study we, analysed students' personal statements in which they describe why they themselves wanted to go to one IPSE programme. By answering the research question “Why do students applying to IPSE programmes say they want to go to college?”, practitioners, policy makers, and families can best align their practice and advocacy with those whom it impacts most. This study is an important step in shifting research to include the perspectives of those impacted and attending college, a perspective that is often neglected in the current literature (Vroman 2019).

We are researchers located at a midsize university in the northeast United States that supports an IPSE programme for students with intellectual disabilities to have total access to this university. Both members of the research team enter this study with extensive programmatic and research experience within IPSE. While one of us identifies as a disabled researcher neither has a intellectual disabilities. This positionality provides context for interpretation of research results and discussion. We recognise this positionality as both a strength and a limitation.

We utilised a Disability Studies in Education (DSE) theoretic framework throughout this study. Central to DSE is its consideration of disability both as a social construction and simultaneously as a natural part of human diversity (Connor et al. 2008; Taylor 2006). DSE does not deny that disability is “real”; rather what is central to utilising a DSE framework is the examination of the ways in which contexts (social, cultural, historical, and political) shape our understanding and meaning-making of disability/disabled individuals (Connor et al. 2008; Taylor 2006). DSE rejects the medical model of disability and distinguishes itself from traditional special education in that the goal of DSE is not to cure, fix, or eradicate disability. DSE further pushes back against the value-laded notion of disability constructed under the medicalized model for which traditional special education (K-12 and higher education) rests. This study was grounded in the presumption that students with intellectual disabilities belong in all aspects of college, are best suited to make decisions about their lives, and are best positioned to dictate what is best practice within a field that has historically welded immense power unbalance.

Further, DSE works towards dismantling ableist notions within education and society, especially deficit perspectives towards disabled students to ensure meaningful learning in inclusive classrooms (Connor et al. 2008). We extend this to include college and university settings. Finally, DSE “recognises the embodied/aesthetic experiences of people whose lives/selves are made meaningful as disabled, as well as troubles the school and societal discourses that position such experiences as ‘othered’ to an assumed normate”; and perhaps most significant to this study, “includes disabled people in theorising about disability” (Connor et al. 2008, 448). In this study, rather than privileging professionals, utilising a DSE frame promotes a centring/privileging of disabled individuals' lived experiences.

Data for this study included subsections of students' applications to one IPSE programme housed at a large university in the Northeast. Specifically, we analysed 44 students' de-identified personal statements in applications from 2019 to 2020. Applications were a combination of students who were and were not accepted into this IPSE programme. Applicants provided written (handwritten, typed, and/or scribed) responses to the following questions: (1) “Why do you wish to attend (this IPSE) and take college classes?” (2) “What do you want to accomplish in college? What are your goals for after graduation?” (3) “This is a 4-year college programme. How can (this IPSE) help you achieve your goals?” (4) “Is there anything else that we should know about you to make your experience here the most successful one?”

We analysed within a DSE theoretical framework the students' personal statements on applications applying to one IPSE programme. We use constant comparative method (Glaser and Strauss 1967) as iterative and recursive processes (Ravitch and Carl 2016) to analyse data. Each author engaged in inductive and systematic coding processes utilising various codes, such as in-vivo, descriptive, and emotional to seek emergent categories and themes within and across the transcripts, using a process similar to that described by Saldaña (2013). Following a constant-comparative data analysis, the first and second authors identified four overall themes related to students' desires for full access and nothing separate, continued learning, following in their families and friends' “footsteps”, and to be as independent as possible. A number of sub-themes also emerged relating to the recognition of needed support and unique and distinct learning outcomes.

Applicants indicated a strong desire to be truly and fully included in every opportunity available to and alongside their matriculated peers throughout their college programme. This recognition of the potential for forced segregated classes and living arrangements (e.g., separate dorms for students in an IPSE programme and mandated segregated classes) was highly present in the data. For example, one applicant indicated, “I was in an inclusive high school with everyone else, and I want to be in an inclusive college. I don't want to be in separate classes”. Here the applicant indicated that their expectation for college was to continue in the inclusive setting like their high school experience. Another applicant stated, “It's important for me to be part of the university campus and be able to do things that are available to all the students”. Of note, applicants frequently discussed inclusion as not being separate and available to all. This is an important distinction when discussing inclusion, particularly as it relates to individuals with intellectual disabilities. It was not that applicants indicated that they would only like to be around nondisabled peers; rather findings indicate a much more nuanced understanding of inclusion as access to opportunities and choice and not segregated programming.

Within a DSE theoretical framework this disrupts the widely utilised disabled and nondisabled dichotomous paradigm often used to discuss inclusion. Rather than the metric for inclusion simply being around nondisabled peers, this finding decentres the nondisabled peers. A decentring of nondisabled peers from the conversation around inclusion further aligns with DSE, as the centring nondisabled individuals within the conversation of inclusion upholds notions of ableism—positing that being nondisabled is preferable to being disabled (Hehir 2005). This is not to say that segregated programming is or should be acceptable, rather what it indicates is that inclusion must move away from the single metric of access to non-disabled peers and shift to an understanding of access to experiences and peers driven by the students with intellectual disabilities themselves.

Applicants indicated a strong desire to go attend this IPSE because the practice of attending college was something they have seen others do. This reinforces the notion that for some, attending college is simply the expected trajectory, what Uditsky (1993) refers to as “normative pathways”. One applicant noted, “My friends go to college and I want to go too”. Another stated, “My entire immediate family are all college educated and I see the potential in a higher education”. This familial and community modelling as one driving force to attend higher education should be unsurprising given that existing literature indicates that for students entering college through a traditional/matriculated pathway, a positive correlation between having parents who attend college/university and their child attending college/university has long been established (Hossler et al. 1999; Mishra 2020). Yet, this finding is novel as it applies to students with intellectual disabilities entering college through an IPSE programme. This finding should also caution the field to consider who is further excluded from college. Existing literature indicates that a majority of those accessing IPSE programmes are students who identify as White and high income and there continues to be an underrepresentation of students enroled who identify as Black (Andresen 2024; Heider 2023). Access to college along racial and socioeconomic gaps in the United States has been persistent, lending to the notion that family models for students with intellectual disabilities may not be present in all demographics (Andresen 2024; Heider 2023). This finding further illuminates that IPSE must actively disrupt and alter its structure and recruitment as to not further perpetuate inequities in access to higher education.

Throughout the research, applicants indicated a near universal desire to gain skills for greater independence. One applicant indicated, “To be more independent.” another noted “Become more independent”. Another positioned this particularly as being in a location away from home: “I want to learn to be away from home and become independent.” Here the applicant indicated that the location and unique ecosystem of college devoid of “home” is necessary to acquire the desired outcome of more independence. Inherent to the structure of a matriculated college experience or “normative pathway” (Uditsky 1993) are opportunities for improvement in skills necessary for living with greater independence. The matriculated college experience provides a soft landing into adulthood through a gradual taking of responsibility.

Some positioned this greater level of independence in relation to post-school outcomes. One applicant indicated that they wanted “To better (myself) and to be more independent after college. I hope to have the skills to live on my own and work full time.” However, benefits to this learning should not be confined to the colonial notion that posits the only metric of success within a capitalist economy is one's labour/productivity, a note of significance particularly when considering postcollege outcomes.

Throughout applications, applicants described a desire to learn. This learning was positioned in a variety of ways, categorised here as three unique subthemes: to learn to be an adult, to learn new things, and to learn for employment.

Despite improving access to higher education from models of only the ‘elite’ (White, nondisabled, wealthy and males in specific professions) to ‘mass access’ accelerated by policy precipitating the end of World War II, many groups continued to be denied admittance to postsecondary education thwarting so called ‘universal access’, with scholars instead labelling current access as high participation in places such as the United States (Trow 1973; Marginson 2020). In all levels of access to higher education, students with intellectual disabilities are still largely excluded based on their disability. When we consider who can and should be included in higher education, we take up the stance that students should not be excluded based on their perceived intellectual capacity or perceived ability to benefit from higher education; instead, we advocate for ‘universal access’ for those who desire higher education with the support they require to fully access it. This study is an important addition to the existing literature as, rather than focusing on perspectives of professionals or families, it is intentionally designed to privilege the perspectives of students with intellectual disabilities. Findings indicate that students with intellectual disabilities who are applying for IPSE programmes have clear expectations for their IPSE programmes including that it will provide the necessary supports to access the “normative pathway” within college. Applicants described expectations of programme structure including the way in which the programmes are structured, such as fully inclusive courses alongside matriculated peers designed to broaden interests, academic horizons, and future careers. Further findings indicate that applicants with intellectual disabilities desired post-IPSE outcomes including independent living, competitive employment, and campus community involvement. By understanding these aspects of students' desires, current and future ISPE programmes may better align with and therefore better educate their students, enhancing overall best practices.

Given that our findings indicate students' desires and abilities to make decisions about their lives, IPSE programmes should ensure that no undue real or perceived barriers are introduced within the context of the university to support this autonomy. Smith and Myers (2024) found that professors teaching matriculated courses with students with intellectual disabilities enroled at a particular university were eager for more information on how to support these students in their classes. However, professors often sought this information from IPSE programme staff rather than directly from the students themselves, which effectively positioned the students as unqualified when it came to understanding their own support needs.

Our study's findings indicate that individuals with intellectual disabilities should be at the forefront of decision-making regarding the supports they need to fully access higher education. Programmatic staff—particularly those who support both students and professors—must work to ensure that professors do not bypass or overlook students with intellectual disabilities as knowledgeable advocates for their own needs. Additionally, these staff should support students with intellectual disabilities in applying their existing advocacy skills.

Programmes must ensure that students are at the centre of, and driving force behind, decisions made about their education, rather than having decisions made for them. Students with intellectual disabilities already possess advocacy skills and have a clear sense of how they learn best. Rather than assuming or making decisions on their behalf, educators and programme staff should engage these students and ask them directly: “How do you learn best?” To facilitate this, systems must be in place to create open lines of communication, encourage self-advocacy, and provide the necessary support for students to express their needs and preferences effectively.

Smith and Myers (2024) further found that some professors teaching students who access higher education through IPSE programmes interpreted auditing classes as a complete removal of expectations for those students. However, these findings indicate that students with intellectual disabilities themselves conceptualise a significant portion of their involvement in higher education as centred on their learning within classes. When these findings are considered together, they highlight the ongoing need for IPSE programmes to restructure and create systems that meet the needs of both students with intellectual disabilities and faculty. When a disconnect exists, as illustrated in Smith and Myers (2024), it can lead to lowered expectations and the removal of core course material that is central to the educational experience. As more IPSE programmes expand access for students with intellectual disabilities, these gaps must be addressed by altering current practices in existing institutions and ensuring that new programmes—whether in development or already in place—are centred on meeting the needs of these students.

These findings are important given that current IPSE models range from fully inclusive programmes which provide supports so that students with intellectual disabilities access a matriculated college experience, to hybrid programmes which students with intellectual disabilities access some activities available to matriculated peers while also mandating specific programming for students with intellectual disabilities, to completely/near completely segregated programmes which only mandate instruction (including a large focus on life skills and ‘employment’ skills) only alongside other peers with intellectual disabilities (Hart et al. 2006; Vinoski Thomas et al. 2020). The findings from this study indicate that students with intellectual disabilities expect that programmes are structured to provide support so that students with intellectual disabilities are provided instruction and all opportunities within a matriculated college experience. Therefore, programme directors and professionals working within IPSE programmes should work to structure their programme with the support necessary to ensure students with intellectual disabilities have access to the full matriculated college experience. Specifically, IPSE programmes should work to increase opportunities and supports for students with intellectual disabilities to take a full range of academic classes alongside their matriculated peers.

Rather than requiring that students with intellectual disabilities only be around students without intellectual disability, which from a simplistic definition of inclusion may be seen as the goal, students with intellectual disabilities should be free to self-select to enter that spaces which they feel most comfortable in and if they choose/desire alongside peers who have the same lived experiences affinity spaces. This is particularly important given that college/universities are a unique ecosystem embedded with formal and informal social experiences, fostering self- and community- identity formation to (at times) rapidly occur. It is during this time that many students develop their identity. This is particularly important for students who live at the intersection of multiply marginalised identities as education in the United States relies on frameworks of goodness and smartness that positions students across ability and racial lines that has lasting effects on how students not only see themselves but connect within their school ecosystems (Boveda and Annamma 2023; Annamma et al. 2018; Leonardo and Broderick 2011).

Further, these findings address the gap in existing literature on IPSE which is heavily focused on perspectives of professionals, parents, community and family members, and nondisabled students rather than those who are actually enroled in IPSEs. Future research should continue to focus on the perspectives of future, current, and alumni students with Intellectual Disabilities. Researchers should also continuously question what outcomes matter as a measure of “success” post IPSE programme.

By virtue of the current IPSE structure (financing, access, etc.), those applying for IPSE are predominantly White and/or financially privileged generating a potentially incomplete understanding. Given the structure of the applications (in which answers were provided in written form/answers) there is a possibility for researchers' interpretations of text without the context of knowing what barriers this format may pose for the applicant resulting in a potentially incomplete understanding of the data. This is specifically important when considering the modality by which students complete their application and the barriers that the format of these applications impose (i.e., those who type to communicate, those with expressive language difficulties). In this particular study, demographic information such as age, gender, and race was not available and, therefore, was not included in our analysis. Future research could benefit from incorporating such information to provide more tailored, demographic-specific analyses. Finally, as is the case for any college application including matriculated college applications, there could potentially be unknown influence of parents/family/others and internalised expectations on application essays of IPSE students.

The authors declare no conflicts of interest.