Abstract
Students with intellectual and/or developmental disabilities (IDD) increasingly pursue postsecondary education (PSE). Navigating the hidden curriculum—including meeting prerequisites for PSE and employment, using support systems and community transportation, and carrying out adulthood expectations—is an area of challenge. This exploratory case study examined experiences of students with IDD attending a PSE program and stakeholder perspectives. Thirty-two participants (10 students with IDD, 5 parents or guardians, 4 college administrators, 8 college instructors, 4 occupational therapists, and a transition specialist) were interviewed. Conventional content analysis revealed navigating the hidden curriculum as a key theme and three subthemes: (1) adult-based system navigation, (2) persisting challenges with adaptive behaviors, and (3) disability awareness and disclosure. Limited awareness of disability and supports and services needed for a successful PSE outcome were contributing factors. Occupational therapists have the skills to support students with IDD in skill acquisition to successfully transition to and navigate PSE and the hidden curriculum.
Intellectual disability is defined as having an intelligence quotient (IQ) of ≤70 and measured low ability in adaptive behavior skills (i.e., conceptual, social, and practical skills that have been learned and performed daily; American Association on Intellectual and Developmental Disabilities [AAIDD], 2010). Since the reauthorization of the Higher Education Opportunity Act of 2008 (Pub. L. 110–315), students with intellectual and/or developmental disabilities (IDD) have been entering postsecondary education (PSE) settings at increasing rates (Garrison-Wade, 2012; Grigal & Hart, 2010; Newman, Wagner, Cameto, Knokey, & Shaver, 2010). However, many students with IDD enter PSE underprepared to attain a successful outcome (Garrison-Wade, 2012; Webb, Patterson, Syverud, & Seabrooks-Blackmore, 2008). In addition, historical and ongoing marginalization of the abilities of such students and persistence of low expectations have fostered a societal view that they are incapable of benefitting from PSE (Arnold & Rybski, 2010; Garrison-Wade, 2012; Oertle & Bragg, 2014; Webb et al., 2008; Yamamoto, Stodden, & Folk, 2014). Thus, PSE readiness skills have often not been included in students’ secondary education plan (Arnold & Rybski, 2010; Garrison-Wade, 2012; Oertle & Bragg, 2014; Webb et al., 2008; Yamamoto et al., 2014).
Moreover, PSE programs have responded to students with IDD by offering academic supports and services typically used for students with learning or attention issues (Grigal & Hart, 2010; Oslund, 2014). These strategies often do not address challenges with adaptive behavior and social participation skills experienced by PSE students with IDD. Adaptive behavior skills, intelligence level, and self-determination are critical for successful adult occupational performance and employment (Leonard et al., 2016; Persch, Grooms, Case, Weisshaar, & Cleary, 2016). Taylor and Seltzer (2011) found that student IQ and adaptive behavior skills affected the type and level of employment offered to young adults with IDD. In an ongoing study of people with autism spectrum disorder with and without IDD, adaptive behaviors were strong predictors of adult transition outcomes regardless of intellectual ability (Diament, 2015). This lack of adequate adaptive behavior skill building becomes a critical issue because people with IDD have a higher rate of unemployment, contributing to a potentially poorer quality of life, than any other disability group (Persch et al., 2016; Sanford et al., 2011; Yamamoto et al., 2014).
Contributing to the challenge of PSE success for students with IDD is limited exposure to and opportunities for acquisition of the hidden curriculum, the often unspoken and unacknowledged content and skills that support academic and adult-level performance (About Education, 2016). The hidden curriculum of PSE is often unexplored by students with IDD, yet it is an important consideration in occupational therapy and transitions under Part C of the Individuals With Disabilities Education Improvement Act of 2004 (IDEA; Pub. L. 108–446), which includes “instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation.” However, even though occupational therapy practitioners, as related services providers in the public schools, have the skillset to support IDEA-related objectives for postsecondary transition, they are infrequently involved in secondary transition planning (Mankey, 2012; Wei, Wagner, Christiano, Shattuck, & Yu, 2014). Gaining an understanding of student ability to navigate the hidden curriculum can assist practitioners and other providers in enhancing adult transition supports for students with IDD, improving their occupational performance in education and employment.
The purpose of this study was to understand the experiences of young adults with IDD attending a transition and postsecondary education program for students with intellectual disabilities (called Triumph in this article; the real program name is not used to ensure student anonymity). Triumph is a comprehensive transition program that offers a certificate after students complete credited, noncredited, or audited courses with both typical peers and peers with disabilities. The study specifically explored the adaptive behavior needs, skills, and abilities demonstrated or required by young adults with IDD as well as past or present experiences in supporting their transition to PSE. Aspects of the hidden curriculum emerged as a key theme; therefore, it is the principal focus of this article.
Method
Research Design
After institutional review board approval, a single, bounded exploratory instrumental case study (Yin, 2014) of the Triumph program was conducted. This case study permitted an in-depth exploration of the Triumph program and the issues related to young adult PSE students with IDD. A bounded system has clearly defined boundaries that specifically limit study participants, context, and time frame (Yin, 2014). Selection of the Triumph program permitted access to key informants, documents, class observations, and relevant participants. Multiple data points permitted a significant understanding of the case and served as a form of triangulation.
Participants
Purposive homogeneous and snowball sampling identified participants who were primary stakeholders who could provide personal perspectives and detailed understanding of the program (Creswell, 2013). These stakeholders—students, parents or guardians of students, college instructors (who also served in the roles of adviser, educational aide, or peer navigator) and administrators, a high school transition specialist, and occupational therapists working in adult transition programs or serving Triumph students—were suggested by two key informants (Triumph program administrators). The first author (Lucretia A. Berg) presented research study information at a staff meeting and two Triumph course sessions to recruit administrator, instructor, and student informants. Initial respondents subsequently identified potential participants. An email was sent to student participants to recruit their respective parents and guardians for the study. Occupational therapist participants were recruited through snowball sampling that used referrals from administrator or instructor participants or email solicitation to school-based programs within the Triumph catchment area. Participants who signed consent forms were included in the study.
Data Collection
Data collection methods included a demographic survey, one-on-one semistructured interviews, the Vineland Adaptive Behavior Scales, Second Edition (VABS–II; Sparrow, Cicchetti, & Balla, 2005), document reviews, and class observations. The semistructured interviews were the primary data source to obtain individual perspectives (Creswell, 2013) and included open-ended questions to understand the experiences and perspectives of students with IDD attending PSE and other stakeholders involved with the students, supports for navigating the PSE setting, and supports or accommodations to participate in PSE activities. An example of a question for students was, “Tell me about things that are hard or difficult here at college,” which was then followed by further inquiries to obtain specific information. An example of a question for parents or guardians was, “If something is hard or difficult, what does your son or daughter typically do?” Interviews ranged from 12–60 min and were completed between October 2015 and February 2016. All interviews were digitally recorded then transcribed verbatim.
Students were also interviewed using the VABS–II as a triangulation to augment interview responses. Having an internal consistency of .80 and moderately strong correlations at .70 (Sparrow et al., 2005), the tool assesses adaptive behaviors from birth to age 90 yr in four domains: Communication (with subdomains of Receptive, Expressive, and Written Language), Daily Living Skills (with subdomains of Personal, Domestic, and Community), Socialization (with subdomains of Interpersonal, Play and Leisure, and Coping), and Motor Skills. The current study used the first three domains. Typically, the VABS–II is completed by a third-party informant. However, because student awareness of adaptive behavior skills is a necessary component to successfully navigate adult systems, self-report was used. Scoring used a 3-point scale that rated behavior as 2 (usually or habitually performed), 1 (sometimes or partially performed), or 0 (never or seldom performed). Domain, subdomain, and adaptive behavior composite scores were obtained and compared with the norming population.
Data Analysis
Interviews were analyzed using conventional content analysis (Hsieh & Shannon, 2005). The first author read all transcripts for initial impressions of content related to adaptive behavior skills. Descriptive and in vivo coding (Saldaña, 2016) were used to reveal relevant text that contributed to identification of themes and analytical categories (Saldaña, 2016). For this study, the hidden curriculum included content related to seeking support or requesting help with navigating the campus and coursework or informing the student about academic or environmental supports, modifications, or accommodations. Trustworthiness was established through triangulation of data collection methods, member checking of interview transcripts and emergent themes, and researcher reflexivity (Saldaña, 2016; Yin, 2014). Descriptive statistics were used to report frequency of VABS–II and demographic survey responses.
Results
Demographics
Table 1 provides participant (n = 32) information by stakeholder group. Student participants (n = 10) were an average age of 21 yr, 4 mo; were 60% female and 50% White; and attended Triumph for a mean (M) of 1.05 yr. Though students received services through an adult transition individualized education program to support academic and community access, only 2 received occupational therapy and as a consult only. Nonstudent participants were an average age of 46 yr, 6 mo (range = 26 yr, 6 mo–67 yr, 5 mo), and were 77% female and 82% White; 64% had a master’s degree.
Participant Demographics, by Subgroup (N = 32)
Note. AA = African American; M = mean; n/a = not applicable; PI = Pacific Islander; PSE = postsecondary education.
Years as related service, M = 23.8 yr, range = 5–31 yr.
Other diagnoses indicate a comorbidity or stated diagnosis of specific learning disability, speech or language disability, emotional disturbance, multiple disabilities, hearing impairment, orthopedic impairment, other health impairment, or autism.
Table 2 reports student participant self-rated performance on domains and subdomains of the VABS–II. Students had an aggregated adaptive behavior composite score suggestive of significant overall limitations (M = 67.30, standard deviation [SD] = –2.3), with 80% of students receiving a score of <70 on the Daily Living Skills domain (M = 65.5, SD = –2.5).
VABS–II Aggregated Domain and Subdomain Scores for All Students (N = 10)
Note. Subdomain v-scale scores (mean [M] = 15, standard deviation [SD] = 3); scores ≤9 (SD = −2.0) are indicative of significant limitations. Adaptive behavior composite derived from the three domain standard scores (M = 100, SD = 15); scores ≤70 (SD = –2.0) are indicative of significant limitations. VABS–II = Vineland Adaptive Behavior Scales, Second Edition.
Interview Responses
Hidden curriculum data were examined from the student perspective and from the perspective of all other stakeholders. Understanding the hidden curriculum of PSE was identified by participants (40% of students and 100% of nonstudents) as critical for a successful outcome. Key findings emerged regarding the three subthemes of the hidden curriculum: (1) adult-based system navigation, (2) persisting challenges with adaptive behavior skills, and (3) disability awareness and disclosure.
Adult-Based System Navigation.
Problems with navigating adult-based systems for students with IDD were the result of limited awareness of differences between systems of entitlement (IDEA) and eligibility (Americans With Disabilities Act Amendments Act of 2008 [ADA]) as they pertain to adult supports and services, available supports and services that promote program completion, and how to seek supports and services through various agencies. In addition, students appeared to have little understanding of the expectations of public school system (i.e., K–12) versus those of PSE. For example, one PSE administrator stated that
they need someone to kind of walk with them to help them navigate and learn an entirely new system. Many of the students were not engaged at all in being high school students or K–12 students. They didn’t necessarily learn the system there. The system was just delivered to them, and they didn’t have to do much navigation.
Navigating adult-based systems involves several areas of the PSE hidden curriculum. Students have to learn about the new campus environment. For example, according to one male student,
[At] first it was kind of, “Where do I go for . . . ?” since this was my first year. Or, “Who do I communicate with?” So I have to do my bubble, how to fill it with people I got comfortable with [instead of] the people I didn’t have comfort with.
They must learn to manage bureaucracies related to community transportation and financial management. Although complete independence in this area is desirable, co-independence may be necessary, as noted by one parent regarding her daughter’s abilities:
She can’t do higher level thinking . . . . She will probably never be able to pay bills or make a budget.
They must meet the performance expectations of being a college student, which according to an occupational therapist, involves
learning where to go for assistance[,] how to make phone calls[,] who to contact if questions arise, how to talk to instructors about homework, [and] what happens when you fall behind.
Students must engage in a social world that is different from that of their familiar public K–12 special education program. As one parent commented, “[I remind her], You are not going to be in the classroom with the same 20 special needs people every day.’” An occupational therapist expanded on this idea, remarking that students must
tak[e] care of the physical needs independently, and then the social–behavioral [issues] because I think people are afraid [of] annoying behaviors or aggressive behaviors—that’s where job host sites are going to be the most reluctant. So they have got to be able to be acceptable in the community at a certain level.
Finally, students must decrease their dependency on faculty and staff for executive function skills (e.g., organization, task management, communication management, time management, social participation), which impedes their own ability to navigate the natural supports within PSE. For example, one occupational therapist stated that it is important for students to “learn how to turn to new people—nonrelated people—to get the support that [they] need.”
Persisting Challenges With Adaptive Behavior Skills.
Persisting challenges with adaptive behavior skills were noted in conceptual, practical, and social areas (AAIDD, 2010). All participants indicated that adaptive behavior skills were a challenge for students participating in PSE. For example, the transition specialist stated,
When they come to me, they are really green. We work so much on those soft skills. So we are talking about hygiene is huge. Communication is huge. Those social skills. And traveling—how to use the city bus, how to get from point A to point B. All those things are parts of transition. Also leisure. I call it intentional leisure, because you have to teach that to these young folks. Self-advocacy is another thing that we really work on in here.
Nearly all participants (100% of students and 95% of nonstudents) indicated that conceptual skills (e.g., reading, writing, comprehension of directions, executive function skills) were the greatest area of challenge. The change of expectations regarding these skills from the K–12 system to PSE was daunting for some students, as indicated by one of the instructors:
A lot of our students have come from special ed, and they weren’t challenged at all, they weren’t held accountable for things like homework. So . . . students come in for the first time and have real expectations. . . . we are not treating them like they are special in a special ed class. . . . You are in college, there [are] real expectations, and if you are not meeting those expectations, there [are] consequences.
A persisting challenge with practical skills (e.g., personal care, occupational skills, use of money, transportation) was more of a concern for students (80%) than for nonstudent stakeholders (68%). Yet, all parents and guardians shared that activities of daily living and instrumental activities of daily living were persisting needs not addressed by PSE. In addition, confusion was prevalent about who should address challenges with practical skills. For example, an occupational therapist stated, “I think people figure [that these challenges should be addressed by] vocational counselors . . . [or] teachers; [it’s] somebody else’s business.” To further augment this outcome, VABS–II results reflected that 70% of students relied on parents or guardians for home and financial management, shopping, and meal preparation and cleanup. Barriers related to acquisition of self-care and personal hygiene skills were reported by all occupational therapists and included overreliance on paraeducators or primary care providers.
Both students and instructors reported that technology was a strength, tool, and coping strategy in overcoming practical skills challenges. Students used smart phones for mapping transportation routes and staying in contact with peers, advisers, instructors, and parents or guardians. For example, one male student stated,
I keep my calendar in my phone, I keep . . . my job coach number in my phone, my adviser’s number in my phone, [and their] emails. My phone helps me; I use it to get onto the bus to get to school.
However, technology was also a barrier to learning as a result of inconsistency in student monitoring and responding to emails and not understanding when to turn off personal technology devices.
A greater percentage of nonstudents (91%) compared with students (60%) indicated that social skills (e.g., interpersonal skills, social responsibility) were a challenge. Of particular concern was the naiveté (i.e., inexperience or gullibility) demonstrated by many young adults with IDD, which could result in a potential misunderstanding with strangers or people in positions of authority. For example, a parent stated,
He is twitchy. He is kind of a sensory mess. And anxiety presents as twitchy. So, when I think about him in a situation where he looks shifty and [people in positions of authority] might approach him, and then he gets nervous, and his language processing reduces, and his ability to understand the question and not answer it from a wiseass or rote statement [is diminished].
Another social challenge was navigating relationships outside of the special education environment. According to a peer navigator,
The most challenging for them, based on my experience, is to take a step forward to do something new. Very often, I see how they want to go somewhere, but they just need somebody who will ask them what they want or will tell them “Let’s go together.”
Disability Awareness and Disclosure.
Lack of disability awareness and disclosure can diminish the ability of students with IDD to secure needed supports and accommodations. Although 100% of nonstudents shared that self-advocacy, initiative and motivation to succeed in college, empathy, respect, and self-awareness were critical for PSE goal attainment, only 30% of students mentioned these characteristics. Most students appeared to have little awareness of disability and the need for supports and strategies to overcome the challenges of disability. For some, developing initiative for personal learning had been an ongoing challenge. One instructor stated that “they feel overwhelmed and . . . don’t want to go to campus experiences or take classes outside of the Triumph program.”
For many, challenges associated with stigma of disability were revealed. Although all students take a course on communication and self-advocacy, only a few were comfortable disclosing their disability. Acknowledging or labeling disability was met by most students with uncertainty. For example, one student stated, “I just don’t feel comfortable talking about it to anyone . . . [because] I don’t like telling anybody that, and what does it mean anyway?” In addition, an instructor with a disability reflected on the difficulty of the stigma of disability and its effect on garnering supports for people with disabilities:
I am sad when my students say to me they don’t want to talk about their disability, they don’t want to be disabled—like I am. [It] saddens me because society taught that . . . being disabled is bad. And I wish that we could [have a society in which] we could be open about it, and have it be part of our identity, and have it be something that could be looked at as a good thing, as a positive, and be honest about it, so that people can feel open and safe to disclose. Because I think a lot of it is they don't feel safe. [If] we can . . . end the stigma and the negativity that so much surrounds disability, and we start saying more positive things about it, and talk about the unique aspects of all the different types of disabilities, [we could help] people understand why a person may need supports.
Discussion
Triumph students entered PSE with an array of skills, abilities, and needs. Challenges with expectations of performance of adaptive behaviors, varied ability to independently navigate adult-based systems and contexts, and socialization related to ability were contributing factors that affected student ability to navigate the hidden curriculum.
Similar to findings by Laverdure and Rose (2012) and Garrison-Wade (2012), there was concern that PSE students with IDD learned socialization skills for adult independence later than was desirable. Even with the acknowledged challenges in life skills, relationships, and daily care routines, there was uncertainty about which service agency should focus on the progression of these students’ adaptive behavior skills. Thus, as noted by Cheak-Zamora, Teti, and First (2015), adaptive behavior skill development was relegated to caregivers, who had to scramble to figure out how to advance students’ skills. For students with IDD attending PSE, many adaptive behavior skills were areas of challenge, and occupational therapy that addressed these needs was indeterminate (Kertcher, 2014; Mankey, 2012; Pereira, 2012). Therefore, continued student dependence and reliance on adult support were demonstrated in nearly all realms of adult-based performance. As also noted by Cheak-Zamora et al. (2015), well-meaning attempts to support student independence in skill acquisition presented as a barrier, especially in relation to daily activities. Yet, the needs and support services for PSE students with IDD are individual and evolving as performance expectations for adaptive behavior skill attainment increase (AAIDD, 2010).
Challenges with adaptive behavior skills may have contributed to students’ inability to independently navigate adult-based systems and contexts. Similar to findings in Garrison-Wade (2012) and Wei et al. (2014), participants reflected on barriers to adaptive skill acquisition. Because accommodations in K–12 were a mandate of laws and policies, student interaction with unfamiliar people or learning to maneuver through new contexts may have been limited (Monteleone & Forrester-Jones, 2017). Thus, the findings of Cheak-Zamora et al. (2015) regarding ongoing challenges of students with IDD to independently navigate the social world outside of special education were supported. A combination of low performance expectations, overreliance on adult support (e.g., teachers, paraeducators, parents), a marked reduction in occupational therapy services (Mankey, 2012), and limited variety in classroom student population may have fostered dependency that persisted into PSE (Garrison-Wade, 2012), inadvertently leading to these students being underprepared for navigating the adult-based PSE and employment systems.
The associated characteristics of self-determination, including self-advocacy, self-awareness, motivation, and initiation, were important for optimal PSE outcome (Crabtree & Sherwin, 2011; Webb et al., 2008; Wehmeyer & Abery, 2013). Equally important was the need for self-regulation. Managing behaviors, sensory needs, and physical needs has been described as critical for both academic and employment success (Champagne, 2014). Yet, inconsistency in disability awareness and disclosure were the greatest barriers to identifying accommodations and supports (AAIDD, 2010). Students’ lack of understanding of their performance skills and abilities was inadvertently created by long-term concealment of disability by people within the students’ circle of support (e.g., parents, guardians, friends, educators, health care providers; Monteleone & Forrester-Jones, 2017). Though some students expressed the importance of self-disclosure to obtain needed help, others expressed the need for privacy. The impact of stigma associated with disability may have been a factor in reticence to reveal or be associated with disability support services (Cheak-Zamora et al., 2015; Getzel & Thoma, 2008; Monteleone & Forrester-Jones, 2017; Oslund, 2014). In addition, the K–12 public school system may have limited opportunities to practice identifying needs and requesting supports and accommodations (Crabtree & Sherwin, 2011). Disability awareness and disclosure remained a challenge for students with IDD in PSE because many were reluctant to identify with or discuss disability. “Without a clear comprehension of disability and associated terms and diagnoses, one is forced to develop one’s own notions of disability based on tangible manifestations, external pressure from others and pejorative self-degradation” (Monteleone & Forrester-Jones, 2017, p. 311). Issues of safety, trust, and stigma associated with disability led to discomfort with novel situations and contexts and may have impeded students’ opportunities to spontaneously learn aspects of the hidden curriculum of PSE.
Study Limitations
Generalizability was limited because of the nature of case study research and the focus on one bounded case. Nonprobability sampling reduced the ability to generalize findings to the broader college population; however, it was deemed appropriate considering the exploratory nature of the study. Though triangulation was incorporated, one person acting as researcher, analyzer, and interpreter through all phases of the research process may pose a challenge with validity and reliability. Finally, on student self-report on the VABS–II, a few participants required content restatement or clarification. Thus, clarity of responses may have been affected.
Implications for Occupational Therapy Practice
Results revealed several unmet needs for students with IDD in areas of occupational performance required for PSE and future employment success, particularly nonacademic demands in the hidden curriculum. Unmet needs were expressed by participants despite the availability of Triumph supports and services. Important strengths and supports were also revealed, including use of technology and acceptance of peer navigators to help with student engagement, suggesting that these factors may be important sources of support to develop relevant skills to enhance independence in navigating PSE. Youth-to-adult transitions require a multitude of shifts in occupational performance, roles, and expectations. Therefore, it is important to listen to the voices of stakeholders and respond with socially just service provision and to explore occupational therapy service delivery models within the K–12 and PSE systems (Kertcher, 2014; Laverdure & Rose, 2012; Pereira, 2012). Our study findings have the following implications for occupational therapy practice:
For students to navigate roles and demands of PSE, occupational therapy practitioners can help students develop important occupational performance skills through instruction, accommodations, and other supports and strategies (Jirikowic, Campbell, DiAmico, Frauwith, & Mahoney, 2013).
A systems change for school- and clinic-based occupational therapy is required to close the gap in service provision to students with IDD transitioning into PSE. Practitioners must advocate for and promote the role of occupational therapy to help secondary and postsecondary students to develop adaptive behavior, self-advocacy and self-determination, employment skills, and life skills.
Conclusion
PSE is an option for young adults with disabilities and increasingly so for those with IDD (Grigal & Hart, 2010). Adaptive behavior and life skill needs persisted for several students, affecting their ability to successfully navigate the PSE setting. Though numerous supports, accommodations, and strategies for success were provided, students were generally underprepared to independently navigate many important PSE demands. The question remained as to which professional entity was responsible for progressing persisting adaptive behavior and life skill needs and thus navigate novel adult venues. Adaptive skill acquisition should begin at an early age along with collaboration with various supporting agencies to progress skill development during the youth-to-adult transition.
Occupational therapy provides many avenues for promoting skill attainment to achieve or return to independence in life. Yet, how the students with IDD entering PSE received support to attain necessary life skills remained uncertain. If, as indicated by Leonard et al. (2016), adaptive behavior skills were a key indicator of PSE and employment success for young adults with IDD, occupational therapy may be a critical service for students advancing toward adulthood to develop the necessary skills to navigate the hidden curriculum of various adult-based settings.
Footnotes
Note. Each issue of the 2017 volume of the American Journal of Occupational Therapy features a special Centennial Topics section containing several articles related to a specific theme; for this issue, the theme is occupational therapy’s role in youth-to-adult transition. The goal is to help occupational therapy professionals take stock of how far the profession has come and spark interest in the many exciting paths for the future. For more information, see the editorial in the January/February issue, 
.
Acknowledgments
Grateful appreciation is given to the Triumph program and all participants, especially the students, who participated in this research and risked sharing their stories. This study presents data from a larger dataset from an unpublished doctoral capstone conducted by the first author in partial fulfillment of the Doctor of Education from the University of Washington, Tacoma.