Retrospectives on factors influencing inclusive opportunities forcollege students with extensive support needsAnn-Marie Orlandoa , Elizabeth Klinepeterb and Megan Fosterc
aCentre for Autism and Related Disabilities, Division of Child & Adolescent Psychiatry, University of Florida, PO Box100234, Gainesville, FL 32610, USA; bSchool of Special Education, School Psychology, & Early Childhood Studies,University of Florida, PO Box 117050, Gainesville, FL 32611, USA; cSchool of Health Professions and Education, UticaCollege, 1600 Burrstone Rd, Utica, NY 13502, USA
ABSTRACTCurrent U.S. legislation calls for students with disabilities to be involvedand make progress in general education curriculum. Despite thelegislation, students with extensive support needs continue to besegregated from their peers and post-school outcomes remain dismalfor this population of students. The purpose of this retrospective studywas to explore the perceptions of two students with extensive supportneeds and their caregivers regarding factors that contributed to theirinvolvement and progress in the general education curriculum andeventual enrolment in four-year, post-secondary institutions in theUnited States. Findings related to the role of participants’ perceptions ofself, participants’ engagement in advocacy roles and activities, andspecific human and material supports that both facilitated and acted asbarriers to education in the general curriculum emerged as recurrentthemes. Limitations of the study and suggestions for future research andpractice are presented.
ARTICLE HISTORYReceived 15 March 2015Accepted 10 February 2016
Over the past four decades, education for students with disabilities has made tremendous progress inthe United States. In 1975, The Education for All Handicapped Children Act was enacted, mandatingstudents with disabilities between the ages of 6 and 21 years be provided a free and appropriate pub-lic education within the ‘least restrictive environment’. Throughout the years, the law has beenamended, and currently exists as the Individuals with Disabilities Education Improvement Act(IDEIA). IDEIA (2004) mandates the provision of special education services within generaleducation contexts to the maximum extent appropriate. In 2001, the Elementary and SecondaryEducation Act, which provides education for all children, was reauthorised as the No Child LeftBehind Act of 2001 (NCLB; 2001). With the NCLB Act, the expectation currently stands that all stu-dents should have access to general education contexts, content, and materials to promote desirablepost-school outcomes (Ryndak et al. 2008). Furthermore, both IDEIA and NCLB legislation requireschools to plan for and provide supports and services required for students with disabilities tobe involved and make progress in general education curriculum. In this way, all students will be pre-pared for post-secondary educational and career opportunities.
Despite existing legislation, recent estimates suggest that involvement in general education cur-riculum and post-secondary institutions is limited particularly for students with extensive supportneeds, defined as those students who require pervasive assistance across everyday home, social,
educational, occupational, and community contexts (Schalock et al. 2010). This might include stu-dents who have significant cognitive impairments, multiple disabilities, dual sensory impairment,and autism spectrum disorders (ASD). For instance, the most recent estimate available from the Uni-ted States Office of Special Education Programs (2012) indicates that approximately 70% of studentswith multiple disabilities between 6 and 21 years of age spend less than 40% of the time in theirschool day in general education classrooms throughout their elementary and secondary schoolyears. In addition, the most recent estimate available from the U.S. Department of Education(2011) suggests that less than 29% of students with multiple disabilities attend post-secondary insti-tutions after completing high school, including only 6.2% who enrol in four-year institutions and lessthan 1%, that enrol in any institution immediately following high school. Within the United States,post-secondary institutions most often include two- and four-year vocational, college, or universitysettings in which students can enrol for higher education. Only data for students with multiple dis-abilities are presented because the available statistics related to these variables for students with cog-nitive impairments, dual sensory impairment, and ASD are either unavailable or aggregated,regardless of degree of impairment. Finally, only 32.7% of individuals with disabilities are employedafter high school as compared to 73.6% of individuals without disabilities (Houtenville and Ruiz2011).
Factors facilitating inclusion
Within the research literature, a number of academic and social benefits associated with inclusiveeducational services have been identified for students with extensive support needs as well astheir peers who are typically developing (Holahan and Costenbader 2000; Kishi and Meyer 1994;Ryndak et al. 2010b). Improved long-term outcomes also have been linked to the context for instruc-tional delivery (Ryndak et al. 2010a, 2010b). For instance, data suggest that when students with dis-abilities spend more time in general education contexts, their post-school outcomes are more similarto the outcomes of their peers (Brown et al. 1986, Ryndak et al. 2010b). Thus, an understanding offactors that lead to the involvement and progress of students with extensive support needs in thegeneral education curriculum is crucial to facilitate improved post-school outcomes. Several factorshave been identified in the literature that facilitate access to the general education curriculum forstudents with extensive support needs, including supports and strategies, assistive technology, andadvocacy.
Supports and instructional strategies
The use of appropriate supports and instructional strategies in schools is one factor that can promotestudent involvement and progress in general education contexts, content, and materials (Downingand Peckham-Hardin 2007; Spooner et al. 2006). Appropriate supports for students with extensivesupport needs might include curriculum modifications, structural and setting modifications, assess-ment accommodations, and access to paraeducator, peer, and technological supports, among others(Lee et al. 2008). Appropriate instructional strategies might include, cooperative learning, inquirylearning, universal design for learning, response prompting, embedded instruction, peer support,and self-determination strategies (Copeland and Cosbey 2008). When planned appropriately andpurposefully, such strategies can lead to improved outcomes for students (Downing andPeckham-Hardin 2007). However, a number of elements might influence this planning processand should be considered.
The process of planning for and implementing appropriate supports and strategies to educatestudents with extensive support needs within general education contexts is often a school-wideeffort, requiring the collaborative support of a range of stakeholders (i.e. teachers, administrators,and caregivers). One element that might influence this process is professional development for gen-eral educators, special educators, and paraprofessionals (Carter and Hughes 2006; Downing and
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Peckham-Hardin 2007; Lee et al. 2008). School-based personnel must have the knowledge andskills to deliver individualised, meaningful, and relevant supports to students with extensive sup-port needs, accompanied by ongoing opportunities to advance one’s knowledge and skills. Inaddition, both the positive attitudes towards inclusion and positive expectations of the learningcapacities of students with extensive support needs have been linked to personnel’s willingnessto provide appropriate supports for these students in general education contexts (Downing2006; York and Tundidor 1995). Finally, a third element might include school-wide efforts to coor-dinate and use appropriate supports and strategies for students with extensive support needs(Carter and Hughes 2006; Hunt et al. 2003; York and Tundidor 1995).
Assistive technology
Recent advances in assistive technology (AT) offer much promise in supporting students with exten-sive support needs and serve as a second important factor to consider in the provision of accessibleeducational services. The Assistive Technology Act of 2004 (P.L. 108–364) seeks to promote access toAT devices and services for persons with a range of disabilities across the lifespan by increasing avail-ability of state funding to support access to technology. The act outlines access to AT as critical inpromoting full participation of individuals with disabilities across a range of educational and com-munity contexts, facilitating meaningful outcomes for these individuals (§ 2). Despite the law, themost recently available estimate suggests that only 27.1% of students with extensive support needsuse AT devices throughout daily life (Quinn et al. 2009).
Researchers have identified a number of elements that might influence use or abandonment of ATdevices and services across settings. For instance, caregivers and educators often require assistance inidentifying which devices best match students’ needs, training on implementation, and ongoing sup-port to ensure devices are used and updated (Alper and Raharinirina 2006). Considerations sur-rounding the cost and mobility of devices must be taken into account when determining whichdevices are most suitable to matching students’ needs in the context of their environment (Coleman,2011). Successful planning for the integration of devices into students’ academic and social goals bycollaborative teams at the school level also has been linked to ongoing use of AT devices (Coleman,2011). Finally, shared goals and valuing of the students’ use of the device on the part of caregivers,educators, and peers must be demonstrated to ensure students’ benefit from AT devices across con-texts (Soto et al. 2011).
Caregiver roles and advocacy
A third important factor in the provision of educational services is caregivers’ knowledge of their roleand rights in the process of advocating and planning for the inclusion of their children. Within theresearch literature, caregivers are acknowledged as the key to the process of planning for the success-ful inclusion of their children with extensive support needs (Gallagher et al. 2000; Grove and Fisher1999), a right afforded through IDEIA. Yet, caregivers often face a paucity of information regardingthe planning process, encounter both overt and covert pushback from schools when requestingdevices and supports, and report feeling alone and incompetent in the process of advocating fortheir children’s education in inclusive contexts (Erwin and Soodak 1995; Grove and Fisher 1999).
Researchers have identified a number of elements that influence caregivers’ participation in theeducational process of their children with extensive support needs. For instance, caregivers oftenare required to assume a number of roles in coordinating services for their children within generaleducation contexts. Caregivers might be required to gather independently relevant information froma variety of sources about their rights and decide if they believe inclusive education is appropriate fortheir children given the accessibility of supports and their own ideologies (Gallagher et al. 2000;Grove and Fisher 1999). Often, caregivers must then assume the role of ongoing advocate fortheir children and field uncertainty from school personnel. In addition, they might be required to
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actively coordinate the supports and services required for their children’s schooling, remaininformed of their rights and advancements in supports, and educate school personnel throughoutthe process (Erwin and Soodak 1995; Grove and Fisher 1999; Nespor and Hicks 2010). In linewith these identified factors, the current qualitative study examined the retrospectives of two collegestudents with extensive support needs and their caregivers regarding educational factors that led toinclusive education in elementary, secondary, and post-secondary schools.
Method
For this retrospective study, qualitative research methods were used to elicit detailed perceptions oftwo students about their public school experiences. In addition, these same methods were used toelicit the perceptions of their caregivers about their experiences acquiring public school servicesfor their children. Specifically, semi-structured interview protocols were used for the four interviews(Kvale 1996; Mason 2002; Rubin and Rubin, 2011; Strauss and Corbin 1998).
Participants
Students and their families were identified as potential participants through a purposive samplingprocess. The participation criteria were that the students, (a) had multiple disabilities, (b) attendedgeneral education classes for the majority of their public school education, (c) graduated from highschool with a regular diploma, (d) were enrolled in a two- or four-year institution of higher edu-cation post-high school either part-time or full-time, and (e) used AT to access the curriculum.While other students and their families in the same state also might have met the criteria, this pre-liminary qualitative study required few participants and thus purposive sampling was appropriate tothe study.
Following Institutional Review Board approval, the researchers approached three potential par-ticipants (i.e. three students and their caregivers) who each agreed to participate in the study; how-ever, one caregiver withdrew from the study prior to the interviews because of family medical issues.The remaining two caregivers consented to share their experiences and perceptions about variablesthat led to inclusive education across early childhood, primary, and secondary public school con-texts. Next, the caregivers’ adult children were recruited to participate in the study. For clarification,the participants who provided primary care for the student are referred to as caregiver-participantsand their adult–children with extensive support needs are referred to as student-participants. Con-sistent with qualitative research methods, biases of the researchers must be acknowledged if readersare to form valid and meaningful conclusions from the data (Kvale 1994). For this study, theresearchers were an assistant scholar, a postdoctoral scholar, and a doctoral student associatedwith an OSEP-funded leadership programme focused on research and professional developmentin the area of severe disabilities. Caregiver- and student-participants for the study were selected pur-posively because of their 10-year history of professional interactions with the first author. Theseintermittent interactions focused on educational supports and services for the student-participantsduring their public school careers. Knowledge of the student-participants’ attendance at post-sec-ondary institutions in pursuit of college degrees prompted the researchers to seek informationabout perceived variables that led to the student-participants’ education in inclusive contexts andtheir post-secondary outcomes. The remaining researchers had no prior acquaintance with theparticipants.
The two female caregiver-participants, Kendra and Diane, both held college degrees and for mostof their children’s school-age years did not work outside of the home. In addition, each caregiver-participant was married at the time of the interview. Their backgrounds reflected the dominant cul-ture of their communities (i.e. neither caregiver-participant nor their adult children were from min-ority populations). Although not formally assessed, their socio-economic status can be inferred asmiddle-to-middle-high given their educational backgrounds and employment choices.
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Two student-participants also consented to share their experiences and perceptions. While theyattended the same middle and high schools, the location of their early childhood and primary schooleducation was different. In addition, although their diagnoses were similar, the type and intensity oftheir educational supports and services were different. Christian, a 19-year-old male, was diagnosedwith cerebral palsy and had little intelligible speech. At the time of the study, he used a manualwheelchair powered by his feet when at home, and the motorised wheelchair for longer distancescontrolled with a joystick in his left hand. He could sit up and hold his head up without supports.He showed left-hand dominance for most functional activities, including the use and access of hisaugmentative/alternative communication (AAC) device. Christian lived with his mother, stepfather,and two younger siblings. Regularly, he visited his biological father and two other siblings. Christiangraduated from high school with a regular diploma and was pursuing a two-year degree at a localcollege at the time of the study.
Callie, a 19-year-old female, was diagnosed with cerebral palsy and had intelligible speech. How-ever, fatigue could lead to decreased breath support for speech resulting in low volume and poorarticulation, which decreased her intelligibility. She used a motorised wheelchair for mobility bothat home and in the community, which she operated using a joystick with her right hand. In addition,Callie’s motor weakness distorted her sensory perception and processing, reduced her visual acuity,and decreased her functional vision. Together these created delay and variability in her recognition,identification, and integration of both visual and auditory stimuli. Callie lived with her parents andan older sibling during her school-age years. She graduated from high school with a regular diplomaand was pursuing a two-year degree at a local college at the time of the study.
Procedure
For the data collection portion of this study, the researchers conducted semi-structured interviewswith each participant. The first author conducted each interview along with support from a doctoralstudent. Each interview lasted 60–90 minutes and took place in the home of each participant. Whilethe student-participant and the caregiver were not interviewed at the same time, the interviews wereconducted consecutively on the same day for each student and his/her caregiver. For the interviewswith the student-participants, the caregiver-participant was in the vicinity to provide clarificationupon request. For example, sometimes during the interview, Callie would look to her mother toask for the name of a device or to clarify a sequence of events. During the interviews with the care-giver-participant, the student-participant was present at the home but did not participate in theinterview. For the caregiver-participants, these semi-structured interviews were guided by a set ofquestions designed to elicit information about factors that contributed to the student-participants’involvement and progress in inclusive education contexts. Additional questions focused on thefamily history so that the student-participants’ diagnoses, and supports and services could bedescribed with accuracy. The interviews were audio recorded and transcribed in their entirety. Chris-tian communicated using a dedicated speech-generating device. The voice output from the devicewas audio recorded with the microphone from the recording device placed near the speaker fromthe speech-generating device. The transcriptions then were subjected to analysis.
Data analysis
For the data analysis portion of the study, the researchers first coded the data from the transcribedinterviews. The researchers coded 100% of the transcribed responses independently using HyperRESEARCH™ (Hesse-Biber et al. 1994). Researchers employed a meaning categorisation technique(Kvale 1996), in which segments of the transcripts are condensed initially into broad topic categoriesand then into smaller meaning codes. Through a process of discussion and analysis, the researchersthen collapsed the data categories into larger themes that emerged from several readings of the tran-scripts. The method employed was similar to Thematic Analysis in which themes emerge from coded
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data. This methodology fit well with the study because it was flexible and allowed for coding andrecoding of the data. In addition, the method could be applied with a high degree of fidelity by allmembers of the research team. Results are user-friendly but also rich with data (Braun and Clark2006). Disagreements in both appellation and interpretation of the data occurred in the processof developing initial broad topic categories, smaller meaning codes, and larger themes. To resolvethese disagreements, the researchers engaged in an analytic process that included mutual questioningand reflecting on the transcripts.
Findings
Major themes emerged during the analysis of the data. First, both caregiver- and student-participantsheld certain perceptions of themselves and the student-participants’ capabilities. Second, these per-ceptions lead the caregivers to assume an advocacy role and students to assume a self-advocacy rolein the student-participants’ education. Third, the perceived presence or absence of human andmaterial supports that either facilitated or challenged the student-participants’ involvement and pro-gress in the general curriculum appeared to activate advocacy. Specific findings emerged within eachof these major themes and are discussed below.
Perceptions of self
One of the major themes that emerged during data analysis included the role of perception of self.Within this broad theme, three findings emerged. First, caregiver-participants held certain percep-tions of themselves. Second, caregiver-participants held certain perceptions of their child. Third, stu-dent-participants held certain perceptions of themselves. Each of these perceptions appeared tomotivate the participants’ efforts.
Caregiver-participants’ perceptions of themselvesKendra and Diane held certain perceptions of themselves that contributed to the student-partici-pants’ eventual participation in general education. Throughout the interviews, the caregiversdescribed personality characteristics that contributed to their capacity to advocate for services.For instance, Diane spoke about her persistence and unwillingness to sway in her efforts to haveCallie included in general education. She joked, ‘I just was persistent. I have to say that they probably… when they saw me coming, probably wanted to turn around and walk the other way. But I… shewas included’ (29947,30113). Each caregiver-participant remained constant in her view of herself ascapable of achieving her goal of inclusion.
Caregiver-participants’ perceptions of their students
Kendra and Diane each held high expectations for her child, refusing to let others’ perceptions of herchild limit the child’s services. Kendra and Diane each referred to the child’s possibilities rather thanlimitations. In turn, these perceptions influenced the decisions made regarding each student-partici-pant’s education. For instance, Kendra described knowing Christian could do more than what peopleinitially expected from him. Likewise, Diane explained how her early perception of Callie resulted inCallie being moved from a self-contained classroom to a general education kindergarten classroom:
I just knew that Callie needed more than just being in an ESE [exceptional student education] classroom, thatshe was bright, she was articulate. She had, I knew she could do it and I just, all along the way she needed a lot ofsupport, but I knew that she was capable of doing it. (39548,39952)
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Student-participants’ perceptions of themselvesEach student-participant held certain perceptions of himself or herself that further drove effortstowards the student’s involvement and progress in the general curriculum. Notably, the student-par-ticipants never mentioned having a disability or holding any expectation that the educational contextor content would be any different from that provided to their peers. Rather, the student-participantsdefined themselves by attributes such as their family lives, personality characteristics, interests inextracurricular activities, and current educational status. For instance, Christian described himselfas, ‘I am the oldest in my family of five kids’ (158,198).
Advocacy roles and activities
A second major theme that emerged during data analysis included advocacy roles and activities onthe part of participants. Within this broad theme, findings emerged related to the caregiver- andstudent-participants’ fulfilment of specific advocacy roles founded in perceptions of self.
Caregiver-participantsKendra and Diane were each motivated to assume the role of advocate for her child because of herunderstanding of herself and her child as capable. Each caregiver-participant adopted the role ofadvocate when she felt that her child was not being held to high expectations, or receiving appropri-ate services in the least restrictive environment. Diane discussed one such instance:
She wasn’t really having any conversations or communication experiences with the other kids because most ofthem were non-verbal. And she wasn’t doing grade-level kindergarten work. She was… it was… . just activitiesthat I felt she had achieved or already accomplished. I thought she really needed more…which is why I encour-aged them.…Or ‘encouraged them’, [to] listen to me… had them, and insisted that she be moved to a regularclassroom because I thought that she needed more…more of a challenge. (4005,4504)
Once each caregiver-participant adopted the role of advocate for her child, she engaged in advocacyactivities to obtain the services she felt appropriate for her child and to overcome any existing bar-riers. Kendra and Diane each acknowledged the necessity of certain supports in order for her child tobe successful in the general curriculum and in turn advocated for those supports. Specifically, eachcaregiver described educating school personnel about her child’s needs both to ensure her child’sneeds were met and to overcome any attitudinal barriers on the part of school personnel. Caregiversalso reported maintaining contact with school personnel to establish consistency in classroom sup-ports. For instance, Kendra described making phone calls to school personnel and visiting the schoolto ensure that Christian’s physical needs were met. Each caregiver also did not expect school person-nel to do what she was capable of doing herself, instead choosing to work collaboratively with schoolpersonnel to ensure that supports were in place. As described by Kendra:
You know, I am not expecting you [teacher] to do that because, I mean, we had… a gen-ed person who woulddo that but she had a lot of other kids that she was working on. That my interest was obviously mostly with himso it was better if I could just get it, find a way, keep communicating…We’d get it done, rather than expectingthe teacher and the ESE teacher to get together and figure out the best way for him to do it when she had a 100other kids, or 50 other kids, or 10 other kids. (15573,16056)
Student-participantsBased on their self-perceptions, both student-participants assumed the role of self-advocate andengaged in advocacy activities throughout their schooling years. The importance of self-advocacywas evident as Callie and Christian described their transition from high school into post-secondaryeducational contexts. For instance, Callie discussed her actions upon enrolling in her post-secondaryinstitution:
I knew I had to do something to ensure that I still had access to all of these technologies. So I went and signed upwith the department of rehabilitation, vocational rehabilitation and… the division of blind services and um and
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I also went ahead a signed up with the disability resource centre at [college]. With the help of the disabilityresource centre I am now able to scan some of my own material, like worksheets and um other necessaryclass assignments, um that are needed to be turned in. (4433,4957)
Facilitators to inclusion
The third major theme that emerged during data analysis included the role of facilitators that bothaided in and resulted from advocacy efforts, and promoted each student-participant’s involvementand progress in the general curriculum. Within this broad theme, the role of attitudinal support onthe part of school personnel and material supports emerged as two major findings. Although thesefacilitators emerged and subsided as each student-participant transitioned between schools andclassrooms, they were pivotal in promoting each student’s success.
Human supports: attitudesHuman supports most often took the form of attitudinal support founded in beliefs regarding theimportance of inclusion and high expectations for students with extensive support needs. Whenencountered, these beliefs resulted in coordinated personnel efforts to ensure access to general edu-cation for the student-participants and the provision of appropriate services and supports. Forinstance, in describing positive experiences during Callie’s early elementary years, Diane stated:
The principal was very much in favour of including Callie and other students with disabilities in the regular edclassrooms. Very, a school-wide approach to including students… the music teacher, the art teacher, PE tea-chers… everybody was all on the same page. (7753,8055)
Caregivers reported that consistent with this school-wide support for inclusion, other students in theschool and their parents displayed positive attitudes. Within this environment, Callie and Christiandeveloped social relationships and experienced a sense of belongingness. As stated by Christian,‘I think that the ways that I fit in so well is because they [my peers] didn’t see me as an outsider’(1928,2015).
Furthermore, each caregiver-participant described how her advocacy activities and her child’sdemonstration of his or her abilities resulted in attitudinal shifts on the part of school personnelin favour of inclusion. For instance, in describing Callie’s middle school years, Diane stated, ‘I feltthat I really saw a significant change in people’s perspectives and how they… how schools weremeeting the needs of those students’ (22450,22590). In this way, Callie and Christian affirmedtheir belongingness in general education.
Material supportsAT devices and services played a critical role in facilitating completion of required assignments. Stra-tegic planning for the implementation of these accommodations ensured that Callie and Christiantook part in class assignments, or equivalent assignments, alongside their peers. For instance, Callieand Christian could not flip pages in their books and write out their answers for assignments. Theavailable AT devices provided them with access to the same course content as their peers. Asdescribed by Diane:
So, I felt like if she didn’t have her laptop, but they still would expect her to go to school and take part in classes.It was almost as if, okay, if she doesn’t have her laptop, then nobody else can have their books. (30623,30870)
As described by Callie:
Another technology that I use is Dragon which will allow, instead of using my hand, it allows me to type byvoice, which I have sent many emails… and typed many papers… it allows me to have a bigger vocabularybecause I am no longer dependent on people to help me spell things, I can just say them and it will type exactlythe words that I say. (980,1362)
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Paraprofessional support also was necessary to programme AT devices and assist with task com-pletion in the absence of devices. Diane described the significance of paraprofessional support stat-ing, ‘Callie’s paraprofessional was a very caring woman and she… she was instrumental in makingsure Callie had what she needed… ’ (33940,34070).
Challenges to inclusion
The fourth major theme that emerged during data analysis included the role of challenges toinclusion that existed during the student-participants’ schooling years. Within this broad theme,the issues of professional development and personnel attitudes emerged as two major findings.Although these challenges existed as barriers to student-participants’ involvement and progress inthe general education curriculum, participants leveraged advocacy activities to mitigate these chal-lenges as student-participants transitioned between grades and schools.
Human supports: professional developmentBoth student-participants encountered school personnel who lacked the necessary knowledge andskills to provide the appropriate supports for the students’ involvement and progress in the generaleducation curriculum. Within the United States, teachers might experience a lack of preparationwith regard to planning for and using supports such as AT devices in their classrooms (Judge andSimms 2009). For instance, Kendra described, ‘A lot of times it’s not necessarily people don’twant to [make accommodations]. It’s either they don’t know how to do it, or they don’t have thetime to do it’ (17122,17264). Furthermore, if school personnel did not know how to provide suchsupports, they would often abandon the AT completely. As described by Diane, ‘If there was some-thing that the teacher didn’t know how to modify, she just didn’t do it’ (11062,11182). This lack ofknowledge and skills impacted the student-participants’ involvement and progress in the generalcurriculum, and restricted their access to material supports.
Participants indicated that teachers and paraprofessionals often were unaware of the student-par-ticipants’ AT needs, lacked knowledge and skills in AT device use, and would not consider thedevices in planning instruction and activities. For instance, Diane recalled an example of a parapro-fessional who was not trained and did not use Callie’s device. According to Diane:
That made it difficult because they really didn’t know how to use what Callie was doing so they didn’t bother toget it out and figure it out and then that meant that Callie therefore, did not have… she wasn’t able to… to takeadvantage of what was, I mean, that’s what it was there for was for her to be able to; what was the way she said it?To express herself. (15796,16189)
As Christian and Callie enrolled in advanced courses, the issue of paraprofessional training becamemore prominent. The student-participants relied on paraprofessionals for assistance in school, butoften their paraprofessionals did not understand the material, and were unable to offer support orscribe the material. This occurred because of a lack of paraprofessional training, which challengedthe students’ involvement and progress in the general curriculum.
Human supports: attitudesCaregiver-participants spoke of school personnel who expressed discomfort or refused to have thestudent-participants in the general education context. These attitudinal barriers sometimes werefounded in the belief that the student-participants were inherently different from their peers. Forexample, Kendra described one instance in which members of Christian’s IEP team pushed forincreased time in special education settings despite his academic success. Although Kendra success-fully advocated against the recommendation, she recalled that some members of the team refused tosign the document due to their disagreement.
Most often, however, attitudinal barriers resulted from a lack of training on the part of schoolpersonnel. In one example, Callie’s general education kindergarten teacher allowed Callie to be in
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the classroom but told Diane ‘she wasn’t going to be responsible for Callie.’ This attitudinal barrierappeared to be the result of the teacher’s unwillingness to adapt or accommodate her teaching tomeet Callie’s needs. Likewise, one of Christian’s high school technology teachers initially appearedresistant and uncomfortable with Christian in her class because she was unaware of how to teachhim. It is difficult to know the genesis of the attitudes perceived by the participants. However, itcould be indicative of a need for additional professional development in the areas of accommo-dations, modifications, AT, and inclusive education for pre-service and in-service personnel.
Thus, a number of facilitators and barriers impacted the student-participants’ involvement andprogress in the general curriculum. Each caregiver- and student-participant engaged in ongoingadvocacy efforts, while remaining firm in their own perceptions of self and the students’ abilities,in order to address barriers and utilise facilitators to attain goals throughout the student-participants’elementary through secondary school years. Ultimately, both the caregiver- and the student-partici-pants successfully engaged in ongoing advocacy, resulting in the student’s involvement and progressin post-secondary education, and the students’ independent continuation of advocacy at the post-secondary level.
Conclusion
Despite current legislation calling for students with extensive support needs to be involved in andmake progress in the same general education content and contexts as their typically developingpeers, post-school outcomes remain dismal for this population. The current study examined the per-ceptions of two students with extensive support needs and their caregivers regarding factors thatcontributed to their inclusive schooling experiences and enrolment in two-year, post-secondaryinstitutions. The findings of the study provide insight into the facilitators, barriers, and key roleof advocacy, founded in perceptions of self, in promoting the two students’ involvement and pro-gress in the general curriculum.
One major finding of the study related to professional development and attitudinal barriers facedby student- and caregiver-participants in school. Specifically, each faced barriers associated with alack of educator skills and willingness to provide appropriate supports and accommodations tomeet the needs of the student within the general curriculum. As identified in previous research, skillson the part of school-based personnel are imperative to ensuring the success of students with exten-sive support needs in general education content and contexts (Carter and Hughes 2006; Downingand Peckham-Hardin 2007; Lee et al. 2008). Furthermore, such efforts will not succeed without atti-tudinal support for inclusion on the part of school personnel (Downing 2006; York and Tundidor1995). For both Callie and Christian, however, these barriers did not exist as the sole determinantof provision of educational services. Rather, educational facilitators and advocacy activities attenu-ated barriers and determined outcomes.
A second major finding of the study related to attitudinal and material facilitators that existed forCallie and Christian. In particular, Callie and Christian each encountered personnel who were will-ing to plan for accommodations and establish a sense of belongingness for the student in school.Strategic planning for instructional accommodations, AT devices and services, and paraprofessionalsupport were also the key in promoting the student-participants’ involvement and progress in thegeneral curriculum. This aligns with previous literature, highlighting that personnel time, training,and willingness to facilitate access, in combination with appropriate planning for integration ofdevices into students’ academic and social goals, are crucial in promoting outcomes (Coleman,2011).
Finally, two additional major findings related to advocacy activities on the part of participants,founded in perceptions of self. Each caregiver held consistent, high expectations for her child andadvocated continuously for the human and material supports to facilitate access to the general cur-riculum throughout the child’s schooling years. Each participant identified the important role of thisadvocacy in ensuring each student’s involvement in and progress in the general curriculum,
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suggesting advocacy as a key role in promoting outcomes for students with extensive support needs.This notion aligns with previous findings acknowledging the critical role of caregivers in planning forthe successful inclusion of their students with extensive support needs in school (Gallagher et al.2000; Grove and Fisher 1999).
In summary, because of each caregiver’s advocacy activities and ability to leverage educationalfacilitators and mitigate barriers, Callie and Christian were involved and made progress in the gen-eral curriculum. These experiences ultimately resulted in a regular high school diploma for each stu-dent and enrolment in a post-secondary institution. Thus, this study suggests that caregivers ofstudents with extensive support needs must persist in their efforts to facilitate involvement and pro-gress in the general curriculum, remain aware of and utilise educational facilitators, and mitigateexisting barriers. With this, students with extensive support needs will be best prepared to achievemeaningful, high-quality, post-school outcomes.
Limitations and future directions
There were several limitations to this study impacting the interpretation and generalisability ofresults. First, this study explored only the views of two, middle-to-upper SES students with extensivesupport needs and their caregivers. As such, the experiences of these students and their caregiversmight not be representative of all students with extensive support needs, particularly those of back-grounds that are more diverse. Specific efforts, experiences in school, and life factors might be differ-ent across groups of students. Perceptions of other key stakeholders in students’ lives also wouldlikely be informative. A replication of this study with a larger, more diverse sample would likelybe beneficial.
Second, both caregiver- and student-participants included in this study were selected because theyengaged in advocacy activities and achieved desirable outcomes. A wider variety of participants whoengaged in various advocacy activities and achieved various outcomes as a result would inform ourknowledge of other factors that contribute to post-secondary outcomes for students with extensivesupport needs. Knowledge of other factors might lead to a better understanding of specific factorsthat contribute to specific outcomes.
Finally, this study made use of retrospective interviews, which are subject to memory bias andflaws. Knowledge of both the caregiver-participants’ successes in advocacy activities and the stu-dents’ outcomes might have impacted the participants’ views of the factors that ultimately led tothe outcomes. In addition, the study made use of information recalled from two decades of the stu-dents’ lives, likely subject to memory flaw. Longitudinally exploring the experiences of students withextensive support needs as they progress through their school-age years might be more informative.In addition, future longitudinal studies should explore factors at work throughout the adult lives ofindividuals with extensive support needs, as this remains a much-needed area of research.
Practical implications
The current study offers a number of practical implications for the provision of educational servicesto students with extensive support needs. School administration teams should provide ongoing pro-fessional development opportunities to all personnel, specifically with regard to appropriate edu-cational accommodations and supports, utilisation of AT devices, and collaborative planning forinclusion of students with disabilities in general education content and contexts. School adminis-tration teams also can work to create educational environments that both support the provisionof special education supports and services, and ensure that personnel have the time required to sup-port students.
Educational opportunities also could be provided to caregivers of students with extensive supportneeds. Specifically, caregivers should be informed of their rights, available educational services, andsuccessful methods to advocate for their children. These opportunities for training and information
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could come from school- or district-level personnel directly, or be incorporated as part of caregiversupport groups.
Acknowledgements
This work was supported by the U.S. Office of Special Education Programs [grant number H325D090054].
Notes on contributors
Ann-Marie Orlando is a Research Assistant Professor at the Centre for Autism and Related Disabilities, Department ofPsychiatry, and adjunct lecturer in the School of Special Education, School Psychology, and Early Childhood Studies atthe University of Florida. She completed her doctorate at the University of Florida in Special Education with a focus oninclusive education for students with severe disabilities.
Elizabeth Klinepeter is a doctoral student in the School of Special Education, School Psychology, and Early ChildhoodStudies at the University of Florida. Her research interests include service delivery to students with severe disabilities,particularly in promoting access to the general education content and contexts and community settings.
Megan Foster is an Assistant Professor of Special Education in the Office of Educator Preparation at Utica College inUtica, New York. She completed her doctorate programme at the University at Buffalo, and a post-doctorate fellowshipat the University of Florida. She specialises in access to the general education content and context for students withextensive support needs.
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