Journal of Postsecondary Education and Disability Volume 22, Issue 2

Hadley Relentless Optimism: Inclusive Postsecondary Opportunities for Students with Significant Disabilities 88 - 105 Julie Causton-Theoharis Christine Ashby Nicole DeClouette Postsecond

Journal of Postsecondary Education and Disability

John W Graham, University of Oklahoma

Editorial Review Board

Manju Banerjee; University of Connecticut

Joan Bisagno; Stanford University

Ron Blosser; Green River Community College

Loring Brinckerhoff; Educational Testing Service

Connie Chiba; University of California, Berkeley

Justin Cooper; Eastern Kentucky University

Lyman Dukes III; University of South Florida at St Petersburg

Stephanie Gaddy, Lincoln College

Elizabeth Evans Getzel; Virginia Commonwealth University

Christie L Gilson; University of Illinois

Sam Goodin; University of Michigan

Wendy S Harbour; Harvard University

Cheri Hoy; University of Georgia

Charles A Hughes; The Pennsylvania State University

Michael John Humphrey; Boise State University

Kristina Krampe; Eastern Kentucky University

Tracy Knight Lackey; Jackson State University

Ruth C Loew; Educational Testing Service

Pamela Luft; Kent State

Joseph W Madaus; University of Connecticut

Elaine Manglitz; Calyton College & State University

Joan McGuire; University of Connecticut

Janet Medina; McDaniel College

Deborah Merchant; Keene State University

Ward Newmeyer; Dartmouth College

Christine O’Dell; University of California, Davis

Nicole Ofiesh; Notre Dame de Namur University

David Parker; Washington University in St Louis

Betty Preus; College of St Scholastica

Kelly Drew Roberts; University of Hawaii at Manoa

Frank R Rusch; The Pennsylvania State University

Daniel Ryan; SUNY at Buffalo

Charles Salzberg; Utah State University

Mary Catherine Scheeler; Pennsylvania State Univ Green Valley

Sally Scott; Longwood University

Stuart S Segal; University of Michigan

Stan Shaw; University of Connecticut

Sharon K Suritsky; Upper St Clair School District

Colleen A Thoma; Virginia Commonwealth University

Susan A Vogel; Northern Illinois University

Ruth Warick; University of British Columbia

Kristine Webb; University of North Florida

Marc Wilchesky; York University

Lee Woods; Boise State University

Practice Brief Review Board

Doris A Bitler; George Mason University

Melinda S Burchard; James Madison University

Trey J Duffy; Cal Poly San Luis Obispo

Alberto Guzman; University of Illinois, Chicago

Andrea Henry; Massasoit Community College

Andrew Jason Kaiser; St Ambrose University

Angela S Mooneyham; University of Alabama, Birmingham

Lori R Muskat; Georgia School of Professional Psychology, Argosy - Atlanta

Jack Trammell; Randolph-Macon College

Mary Lee Vance; University of Wisconsin, Superior

Margaret P.Weiss; Virginia Tech

AHEAD Board of Directors

Michael Shuttic, President; Oklahoma State University

Jim Marks, President-Elect; University of Montana

Kathleen McGillivray, Secretary; Bethel University

Michael Johnson, Treasurer; Monroe Community College - Damon City Campus

Jean Ashmore, Director; Rice University

Bea Awoniyi, Director; Florida State University

Karen Saracusa, Director; Mount Union College

Emily Singer, Director; Catholic University of America

Jose Soto, Director; Southeast Community College

Mary Lee Vance, Director; University of Wisconsin - Superior

Stephan J Hamlin-Smith, (ex-officio); AHEAD

The Journal of Postsecondary Education and Disability is available in accessible formats Please contact AHEAD to discuss accessibility requests All members of the Association on Higher Education And Disability receive the Journal.

© 2009, The Association on Higher Education And Disability, 107 Commerce Centre Drive #204, Huntersville, NC 28078 USA

Table of Contents Journal of Postsecondary Education and Disability:

Volume 22, Number 2, 2009

James Martin

Parent Perceptions of the Anticipated Needs and Expectations

for Support for Their College-Bound Students with

Julie Q Morrison

Frank J Sansosti

Wanda M Hadley

Relentless Optimism: Inclusive Postsecondary Opportunities

for Students with Significant Disabilities 88 - 105

Julie Causton-Theoharis

Christine Ashby

Nicole DeClouette

Postsecondary Students and Disability Stigma:

Development of the Postsecondary Student Survey

of Disability-Related Stigma (PSSDS) 106 - 116

Jack Trammell

Promoting University Faculty and Staff Awareness of Students

with Learning Disabilities: An Overview of the Productive

Learning u Strategies (PLuS) Project 117 - 129

Christopher Murray

Carol Wren

Edward B Stevens

Christopher Keys

Learning Technologies Management System (LiTMS):

A Multidimensional Service Delivery Model for College Students

with Learning Disabilities and ADHD 130 - 136

David R Parker

Cheri White

Laura Collins

Manju Banerjee

Joan M McGuire

Rebecca Daly Cofer

Author Guidelines Inside Back Cover

FROM THE EDITOR JAMES MARTIN

Welcome to the Journal of Postsecondary Education and Disability (JPED), Volume 22, Issue 2 This issue brings youfour timely and unique research studies, one practice brief about an emerging new practice, and a book review about a topic of interest to many JPED readers

Because increasing numbers of students with Asperger’s Syndrome are attending postsecondary educational

programs, a paper on this topic begins the issue Morrison, Sansosti, and Hadley explore parental perceptions of the support needs of college-bound students with Asperger’s Syndrome, and the type of self-advocacy skills needed to increase students’ success Read this paper to learn some useful information

In the second study, Causton-Theoharis, Ashby, and DeClouette present the results of a qualitative investigation into two programs that support students labeled with significant disabilities (i.e., cognitive disabilities, intellectual disabilities, traumatic brain injury, and autism) to attend college classes in inclusive settings Read this paper to learn the benefits of this type of program and the obstacles it faces

The third study in this issue examines the degree of stigmatization experienced by college and University students with disabilities Jack Trammell’s unique research suggests that disability stigma does indeed seem to impact students with disabilities This paper raises more questions than it answers, but this is what research is supposed to do Read this paper to look at some very unique findings

Murray, Wren, Stevens, and Keys, in the fourth study of this issue, describe a five-year model demonstration project that increased disability awareness, understanding, and responsive action by faculty and staff at a large private University.Their experience may be useful to other colleges

The expanded practice brief by Parker, White, Collins, and Banerjee describe the Learning Technologies Management System (LiTMS), which they piloted for two years The authors use examples to demonstrate how to use the five

components of this system

Rebecca Daly Cofer from Texas Tech University provides a review of Paul Wehman, Marcia Datlow Smith, and

Carol Schall’s new book, Autism and the Transition to Adulthood: Success Beyond the Classroom Cofer said, “I

especially appreciated the introductory chapter about the characteristics of autism and how they affect the individual.” Thesections devoted to students with autism in higher education helped Cofer better understand what to do to provide access and support for these students This book may assist you too

Enjoy this issue

Parent Perceptions of the Anticipated Needs and Expectations for Support for Their College-Bound Students with Asperger’s

Syndrome

Julie Q Morrison University of Cincinnati

Frank J Sansosti Kent State University

Wanda M Hadley Central State University

Abstract

Many students with Asperger’s Syndrome have the cognitive ability and specific interests to be successful academically at the college level However, these students often have difficulties navigating social systems, and higher education presents great challenges The purpose of this study was to explore parent perceptions regarding the: (a) supports or accommodations college-bound students with Asperger’s Syndrome need at the postsecondary level to successfully adjust to the academic andpsycho-social expectations of the college experience, and (b) self-advocacy skills or strategies needed to increase the

likelihood that students with Asperger’s Syndrome be successful in college Parents reported a variety of strategies that colleges can use to support students with Asperger’s Syndrome within postsecondary settings and provided insights into theirexpectations for college-level supports Implications for practice and recommendations for future research are discussed

Asperger’s Syndrome (AS) is a lifelong disability that is characterized by impairments in social interactions andrestricted, repetitive, or stereotyped patterns of behaviors, interests, and activities (American Psychiatric Association [APA],2000) In addition to formal diagnostic characteristics, many individuals with AS demonstrate a host of challenges that makeeveryday functioning difficult For example, individuals with AS often demonstrate limitations with functionalcommunication, or the use of language for communicative purposes (Landa, 2000; Sansosti & Powell-Smith, 2006).Moreover, individuals with AS often have difficulty recognizing and expressing emotions (Frith, 2003); responding todistracting sensory stimuli within the environment (Kern et al., 2006); and engaging in a host of executive function taskssuch as setting goals; initiating a plan; and monitoring performance (Killiany, Moore, Rehbein, & Moss, 2005) As a result

of such impairments, individuals with AS often do not interact with peers comfortably, possess poor appreciation of socialcues, make socially and emotionally inappropriate responses (e.g., laughing loudly when another student gets hurt), and areat-risk for depression and other affective disorders It is not surprising then, that only 12% of individuals with AS areemployed full-time (Barnard, Harvey, Prior, & Potter, 2001)

Despite a myriad of impairments and a poor longitudinal outcome, individuals with AS often display average to average cognitive abilities and structural language strengths (Klin, Volkmar, & Sparrow, 2000) The presence of elevatedcognitive abilities combined with the propensity of individuals with AS to have areas of special interest (e.g., computerscience, geology, horticulture) may lead an individual with AS to demonstrate exceptional abilities and/or great expertise in aparticular area Because of these strengths, individuals with AS have incredible potential to be successful, productivemembers of society Yet, realizing their full potential is hampered by challenges in meeting the more basic academic andsocial demands of college Although great advances have forwarded our understanding of the transition and adjustment of

above-first-year college students with specific learning disabilities (Hadley, Twale, & Evans, 2003; Thomas, 2000), there has beenonly minimal discussion regarding the unique needs of college-bound students with AS (Dillon, 2007)

Successful Transition to College

One of the greatest challenges for students with AS and their families is transitioning from the familiar model of specialeducation services at the high school level to a very different system of services at the college level (Madaus, 2005) Notonly does the scope of services change, but also the means by which these services are provided For example, studentsupport in college is no longer guided by the Individuals with Disabilities Education Act (IDEA) but rather by the Americanswith Disabilities Act (ADA) A primary focus of ADA is to provide accessibility and promote anti-discrimination (Rothstein,2003), not offer an array of academic supports Although many colleges and universities have begun providing moresupports for students with academic learning difficulties (e.g., study skills, writing workshops), services that address theunique difficulties that confront students with AS transitioning to college are virtually non-existent

Furthermore, college-bound individuals with AS are required to be more independent and responsible for self-advocacy.Specifically, students with AS are expected to deal with increased levels of personal freedom (Brinckerhoff, 1996); theunique challenges of their disability (Conyers, Schaefer Enright, & Strauser, 1998); the performance of acceptable socialskills (Mellard & Hazel, 1992); and other variables such as organizational skills, time management, budgeting, andtransportation Students with AS in college settings also are responsible for securing services (i.e., augmentative equipment)

on their own volition Although these challenges present opportunities to practice and master independent living skills andself-advocacy, many individuals with AS are no longer entitled to resources and accommodations with the college settingthat promote or enhance the development of such skills (e.g., teaching of functional living skills or social skills) Studentswith AS may need to seek additional support outside of the postsecondary setting, such as local rehabilitation agencies Suchagencies often have expertise for working with individuals with AS, yet their services tend to focus on vocational challengesand not college transition (Dillon, 2007) From this perspective, individuals with AS may be less successful in their collegeendeavors because they may not receive the specific services they need Without considerable supports and accommodations

to assist these students with their diverse talents, interests, and perspectives, their successful integration into the collegeenvironment may be in jeopardy

Previous research has highlighted several strategies that are critical for college-bound students with disabilities that maytranslate into successful approaches for individuals with AS For postsecondary students with disability-related needs foraccommodations, effective disclosure of their disability and self-advocacy strategies are viewed as valuable contributions tosuccess (Lynch & Gussel, 1992) For example, stating one’s disability and identifying instructional accommodations withinstructors are two strategies related to successful transition (Durlak, Rose, & Bursuck, 1994) To assist with this, Carroll andJohnson Brown (1996) proposed training in self-advocacy skills to enable students with disabilities to become moreautonomous adults and avert social isolation Regardless of the strategies that are employed, students with disabilities, andindividuals with AS in particular, will need to develop a skill set that emphasizes not only self-advocacy, but also self-controland functional communication in a clear and concise manner in order to navigate successfully the transition to college

A Model for College Student Development

Working knowledge of how students develop during their college years is important for understanding the skills neededfor success in higher education Chickering (1969) and Chickering and Reisser (1993) provided the major theoreticalframework for understanding student development as it relates to successful development of skills and provides a frameworkfor how supports should be aligned for college-bound individuals with AS Specifically, Chickering’s first three vectors ofcollege student development describe the movement of the entering undergraduate toward greater competence, self-

advocacy, and autonomy The first vector, Achieving Competence, relates to the student’s ability to develop intellectual

competence and acquire new information and to expand interpersonal competence and work cooperatively with others.Development of skills in the first vector allows the student to manage a variety of social situations from talking in class to

managing group activities Managing Emotions, the second vector, involves focusing on the development of self-control and

expression of oneself appropriately to a variety of circumstances (Reisser, 1995) It is within this stage that a student

develops skills to recognize his or her own feelings and how to handle emotional circumstances (e.g., roommate conflict,

excessive academic anxiety) The third vector, Moving Through Autonomy Toward Interdependence, entails the student’s

developing freedom from the need for constant reassurance and approval from parents, peers, and others That is, a studentlearns to trust his or her own abilities and feelings as valid sources of information

Within the first three vectors is the foundation for successful transition A student cannot simply progress through thesevectors Rather, the student requires stimulation through challenge and positive support In order to provide challenges andsupport, Chickering and Reisser (1993) suggest that colleges and universities encourage student development by: (a)clarifying institutional objectives and ensuring consistency of policies and practices, (b) disallowing institutional size torestrict opportunities for student participation, (c) providing frequent student-faculty relationships, and (d) providing variedinstructional styles that encourage active student engagement It is within these suggestions that the foundation for collegesuccess for individuals with AS is forged However, it remains unclear as to whether these suggestions align withperceptions of how to best support and accommodate students with AS on the college campus

Understanding Parent Expectations

The role of parents in advocating for their college-bound student with AS is notably absent in the literature regarding theneed to support students with disabilities at the college level Parents frequently serve as powerful advocates for theirstudents with AS at the elementary and secondary school levels Yet, like the parents of non-disabled college students, theactive, overt role of parents in their students’ education is diminished severely at each level as the expectations for studentautonomy increases Parent expectations are highly influential and an understanding of these expectations is particularlyimportant when fostering support for college students with AS

Purpose of the Study

The purpose of this study was to explore parent perceptions regarding the: (a) supports or accommodations bound students with AS need at the postsecondary level to successfully adjust to the academic and psycho-socialexpectations of the college experience, and (b) self-advocacy skills or strategies needed to increase the likelihood thatstudents with AS obtain the supports and accommodations they need to be successful in college To this end, parents from alocal chapter of the Autism Society of American (ASA) provided their perceptions of the supports and strategies needed forcollege-bound students to increase competence, manage emotions, and develop autonomy As awareness of the number ofstudents living with the AS diagnosis increases, so does the need to provide meaningful supports to ensure they have everyopportunity to realize their potential in the college setting The findings from this study are intended to inform and guideprofessionals in the fields of special education, college student development, school psychology, and school counseling whoadvocate for full participation of students with AS in higher education

college-Method

Focus group (qualitative) methodology was used to investigate parent perceptions of the supports and accommodationsthat college-bound students with AS need at the postsecondary level to be successful Focus groups are defined by the use ofparticipants who have a specific experience with or opinion about the topic under investigation, the use of an explicitinterview guide, and the exploration of subjective experiences of participants in relation to predetermined research questions(Gibbs, 2007) A focus group approach was selected because of the exploratory nature of the study coupled with the desire touncover common themes and opinions (Krueger & Casey, 2000; Vaughn, Schumm, & Sinagub, 1996)

Participants and Setting

Potential participants for this study were recruited through a network of professionals associated with a local chapter ofthe ASA A total of four parents of sons with AS expressed interest in this preliminary study and agreed to participate in afocus group The participants included: (1) Ms Peters, (2) Ms Harrison, (3) Ms Clark, and (4) Ms Vincent Ms Peters’ sonwas 16-years-old and in the tenth grade at a college-preparatory, public high school Ms Harrison’s son was 15-years-old

and in the tenth grade at the same college-preparatory, public high school Despite their children attending the same school,

Ms Peters and Ms Harrison had not met before their participation in the focus group Ms Clark’s son was 14-years-old and

in the eighth grade at a Montessori, public middle/high school Ms Vincent was the mother of two sons with Asperger’s Herolder son was 12-years-old and in sixth grade at a Catholic elementary school Ms Vincent’s younger son was 8-years-oldand in the second grade in a special program for students with Asperger’s located in an urban, public elementary school All

of the parents participated equally and without reservation, expressing interest and empathy through their spoken words Inaddition to the parent participants, one professional from the Student Services Program of a local, private, four-year liberalarts University hosting the focus group was a participant and one faculty member from the Department of CounselorEducation of another local, private, four-year liberal arts University served as the facilitator of the focus group

The focus group was conducted in a meeting room of the student union on the campus of a private, Catholic Universitylocated in a city in the Midwest All of the participants were residents of the city and its surrounding suburbs The focusgroup lasted approximately one and a half hours and beverages and snacks were provided

Data Collection and Procedures

A questioning route (see Appendix) was developed by the authors to examine information related to two specificresearch questions:

What supports or accommodations do college-bound students with AS need at the postsecondary level to successfullyadjust to the academic and psycho-social expectations of the college experience, and

What self-advocacy skills or strategies will increase the likelihood that students with AS obtain the supports andaccommodations they need to be successful in college?

Specific prompts for the focus group were based on Chickering’s (1969) and Chickering and Reisser’s (1995) initial three

vectors of college student development: (a) Achieving Competence, (b) Managing Emotions, and (c) Moving Through

Autonomy Toward Interdependence

Each focus group session was recorded using a digital audio recorder Following each focus group, the audio file on therecorder was downloaded onto a computer as a wav file In an effort to keep files small, each wav file was converted

to mp3 format In all cases, the audio recording from the recorder was used for transcription The transcription involvedcreating a written record of all words spoken throughout the session

Data Analysis

The method used to identify themes was adapted from Jehn and Doucet (1996) Two reviewers independently reviewedthe transcript from the focus group and identified segments from the focus group that pertained to each of Chickering’s three

vectors (Achieving Competence, Managing Emotions, and Moving Through Autonomy Toward Interdependence) Segments

were coded as either an area of need or potential support Statements representing similar themes were grouped and counted

to show the concept’s weight relative to other less common themes evident in the transcripts After independently analyzingthe data from the transcripts, the two reviewers compared their findings Themes agreed by both reviewers to be general

themes were reported in the final analysis Two primary themes were defined as (a) supports and accommodations, and (b)

self-advocacy needs and supports Supports and accommodations included services that could be provided by an external

agent (i.e., a college’s Student Services Program, a high school’s guidance department) to assist a family seeking a smoothtransition to college Self-advocacy needs and supports involved a description of skills a student with AS would need todemonstrate in college and included services that would increase the probability of the student performing these skills.Representative quotes from various categories were selected and presented to exemplify the descriptive summary of thequalitative data

Matching Students with Accommodating Professors The parents of students with AS participating in the focus groupidentified a need for careful consideration when scheduling college courses Ms Harrison described a role for a professional

in a college’s Student Services Program in which that person could:

…look at the schedule and they can say, well we know that this particular Latin teacher is not going to tolerate a kidthat, you know, doesn’t look at him, doesn’t make eye contact, won’t take notes You know, that won’t work for theteacher But this teacher is very concrete, has handouts, he can follow along with the handouts, that kind of thing

The parents identified professors that permit alternatives to group work, are open to independent study arrangements, andprovide accommodations for note-taking to be better able to meet their students’ needs Parents also discussed a need forprofessors who have an understanding of the strengths and weaknesses of students with AS The mode of instruction preferred

by the students with AS varied, according to their mothers, with some of the students preferring independent, hands-onactivities and others preferring instructor-led lectures

Advocacy Related to support for scheduling courses, the parents of students with AS identified a need for a professional

in a college’s Student Services Program who would serve as an advocate for their college-age child This professional wouldgather information from other students with disabilities regarding the professors’ willingness to provide accommodationsand tolerance for individual differences in learning and communicating In recommending this course of action, these parentsdrew on experiences attaining positive outcomes when working one-on-one with individual instructors to meet the needs oftheir student, rather than trying to affect change through broader-reaching efforts, such as staff development Informationsuch as this could be compiled to assist all students with disabilities, not just the students with AS As articulated by Ms.Clark, this professional would serve as “a resource person … the interpreter for the student You know, and can also be theadvisor and go-between and so when that student is starting to struggle, is having trouble working things out with theprofessor …” this college-based advocate could provide support A college-based advocate might also assist students with

AS identify intramural clubs and activities that are well suited to their interests (e.g., band, chess club, video gaming)

Alternative Routes Parents of students with AS discussed the possibility that alternative routes to a four-year college

education may be the best avenue for their college-bound child A student with AS may pursue a successful transition tocollege at a two-year college or community college setting prior to attending a four-year college For some students with AS,

a technical institute might provide the best match The parents’ voiced considerable consensus regarding the need for theirsons to live at home and commute to college or possibly live in a dormitory room designed for a sole occupant

Self-Advocacy Needs and Supports: Disclosure

All of the parents agreed that their sons would be most successful in college in an environment where they feelunderstood and supported by professors and peers Developing this level of understanding will require students with AS todisclose their need for supports and accommodations and to advocate for themselves The parents participating in the focusgroup expressed considerable concern that their sons did not have the self-advocacy skills needed to obtain supports in thecollege setting In the words of Ms Harrison:

“I know he knows that he perceives the world in a different way And I’ve tried pretty hard not to put a value judgment

on it – it’s not a good thing or a bad thing, it just is But um, I don’t know I think at least he’s more open to talking about

it occasionally But he’s not somebody who wants to really disclose it.”

In response to the need for strengthening their sons’ self-advocacy skills, the parents identified supports a college’sStudent Services Program could provide to help develop these self-advocacy skills Specifically, the parents identified theneed for: (a) prompts for their sons to seek support from a professional in the college’s Student Services Program, (b)

regularly scheduled meetings with a professional in the Student Services Program, and (c) a channel of communication fromprofessors to a professional in the Student Services Program for instances when the student with AS starts struggling All ofthe parents agreed that their sons would not likely struggle with the course content, but they would need accommodationsand support with organizational skills (i.e., note taking, breaking down tasks to meet deadlines) and interpersonal skills (i.e.,interactions with professors and peers)

Parent Involvement All of the parents agreed that their sons would continue to require higher levels of parental

involvement and support in college than do their neuro-typical peers, particularly with daily living skills (e.g., laundry,money management, scheduling doctors appointments) The parents expressed an on-going need to maximize their sons’capacity to live independently, while maintaining a watchful eye for potential struggles According to Ms Harrison, “thebiggest thing I’ve seen is just as he gets more independent, there’s still like big gaps All of a sudden, oh yeah, I guess wereally didn’t go over that exactly, what you should do in that situation.” The parents identified a possible role for themselves

in helping their sons when trouble arose in the dormitory or another social context Given that students with AS do nottypically recognize the intentions of others, the parents expressed concern that their sons would be taken advantage of by ill-intentioned peers “They’re just the perfect victim,” said Ms Clark, “And they are going to be the ones that are going to beleft holding the bag, because they are a little slower on figuring out, oh, we better be careful not to get caught.”

The parents also saw a role for themselves in helping their sons manage the daily living demands outside of the collegeclassroom (e.g., paying bills, doing laundry) In addition to parent involvement, one parent suggested that her son could bewell served by a job coach/life coach to assist with the daily living demands of on- or off-campus living

Discussion

The present investigation provides a preliminary examination of parents’ perceptions regarding the anticipated supportsand accommodations needed for their college-bound child with AS to adjust successfully to the expectations of the collegeexperience This study is viewed as a first step toward understanding parents’ perceptions of needs and expectations forsupport for their child at the college level

The first major theme that emerged from this investigation was the need for reasonable and appropriate supports andaccommodations Supports and accommodations included collaboration with the college’s Student ServicesProgram/Disabilities Office (SSP/DO) for scheduling considerations and advocacy Participants expressed a desire for SSP/

DO to carefully match students with instructors who understand the characteristics of AS and who naturally employ practice teaching strategies within their courses (i.e., using handouts, guided notes, prompts) In addition, participantsexpressed the need for increased advocacy for students to assist through difficult moments and provide networks for socialsupport Information about alternative routes (e.g., two-year college, technical institute) was also expressed and is criticallyimportant for college-bound students with AS and their parents to consider Pursuit of this information should be a focus ofeducators and guidance counselors at the high school level

best-The second major theme generated by the focus group was the need and challenge of self-advocacy among bound students with AS This need for effective self-advocacy skills represented an on-going challenge for the parents whorecognized that their sons could not maximize their chances for success at the college level without advocating forthemselves Specifically, parents expressed concern with separation versus supervision Recognizing that their sphere ofinfluence will change when their child leaves the familiar K-12 school environment, parents of students with AS will need tocollaborate with the college’s Student Support Services, while experiencing a diminished role as advocate for their adultchild

college-Implications for Practice

The results of this study underscore the need for parents, high school guidance counselors, other student supportpersonnel, and professionals serving in Student Services Programs in colleges and universities across the country toanticipate and plan accordingly to address the challenges of students with AS at the college level Although the findings ofthis study must be considered preliminary and tentative, several recommendations seem warranted First, it seems likely that

professional development will need to occur for both high school staff and postsecondary faculty The content ofprofessional development will vary with the role expectations for each level However, there is certain content that personnel

at all levels should receive Content should focus on awareness of: (a) the unique characteristics of individuals with AS (e.g.,

weak central coherence, executive dysfunction, poor social cognition), (b) the specific social, behavioral, and academicneeds of individuals with AS, and (c) the approaches for remediating difficulties within each of these domains Regardless ofthe approaches employed for providing such professional development, the end result should be a strengthened support staff.Second, it may be helpful for middle and high schools to develop programs for successful transitions for college-boundstudents with AS These programs may want to emphasize the teaching of skills related to complex social interactions, self-advocacy, and organization In an effort to provide optimal skill building, such programs may want to partner with StudentServices Programs at colleges and begin a comprehensive transition plan to occur the semester prior to the student’senrollment These collaborations would allow for the student to not only visit a campus and ease lingering anxieties, but alsoidentify a person who would be available to coach him or her through difficult moments Finally, counselors within highschools and postsecondary campuses will need to consider carefully how to advise individual students with AS From a highschool counselor perspective, careful advisement should occur regarding a student’s options for postsecondary education(e.g., small college or large University, technical school) It is important for advisement at this level to be realistic in order toensure the greatest probability of success for the student For advisement officers/counselors within colleges and universities,considerations for advising should focus on areas related to academics (i.e., careful matching with supportive facultymembers) and social networks (i.e., clubs that align with specific interests of the student) In addition, it would be importantfor advisors to provide the student with resources on campus and within the local area for support

Limitations

The results of the current analysis examining the supports and accommodations that college-bound students with ASneed at the postsecondary level are limited by several factors First, parents who participated in the focus groups were thosewilling to attend a scheduled meeting and discuss their experiences with, or perceptions of, the supports needed forindividuals with AS who are college-bound The extent to which the participants’ reports are representative of all parents orindividuals with AS in this region and other locales is not known Second, the number of participants was relatively smalland may have reflected only those who were actively participating in transition planning or possessed a higher level ofinsight regarding their child’s experiences with AS Attempts to conduct studies with larger samples of parents and/or withindividuals with AS regarding their expectations of college may identify broader perspectives and allow for a directcomparison of those process variables that are facilitative or inhibitory within successful or unsuccessful schoolsrespectively Alternately, a case study methodology could have been employed to explore the unique experiences of eachfamily, however, the opportunity for the parents to interact with one another in the context of a focus group yielded valuableinformation that would be lost using a case study approach Third, the use of a qualitative analysis only measures perceptions

of participants and does not allow for more direct measures of the actual presence or absence of factors within schoolenvironments that are supportive of a positive transition to college

Recommendations for Future Research

Additional research approaches are required to provide a more detailed picture of the specific supports and strategies thatwill promote success for individuals with AS seeking a degree in higher education Although focus group methodology isuseful for conducting exploratory studies such as the one reported in this article, this approach tends to be expensive (i.e.,providing incentives for participants), time consuming (i.e., sorting and analyzing data is often complicated and protracted),and of limited experimental control Future research endeavors may wish to employ methods that provide more detailregarding specific factors that contribute to the success or failure Specifically, it may be useful to explore the perceptions ofcollege-bound students with AS regarding the supports and accommodations they find to be most useful Such researchcould employ self-report measures or surveys In addition, longitudinal analysis of the college experience should beemployed That is, future research should identify the variables within a variety of colleges and universities that havecontributed to successful experiences and identify development for individuals with AS Identification of such variables may

assist in the growth of effective professional development components and models for faculty and staff at higher educationinstitutions, as well as generate specific programs or strategies that could be implemented as part of a preparatory programfor individuals with AS who are interested in attending college.

References

American Psychiatric Association (APA) (2000) Diagnostic and statistical manual of mental disorders (4th ed., text rev.).Washington, DC: Author

Barnard, J., Harvey, J., Prior, A., & Potter, D (2001) Ignored or ineligible? The reality for adults with autism spectrum

disorders London: National Autistic Society.

Brinckerhoff, L C (1996) Making the transition to higher education: Opportunities for student

empowerment J(2), 118-136.

Carroll, A., & Johnson Brown, C (1996) Disability support services in higher education: An

extension of the rehabilitation process Journal of Applied Rehabilitation Counseling, 27, 54-59.

Chickering, A W (1969) Education and identity San Francisco: Jossey-Bass

Chickering, A W., & Reisser, L (1993) Education and identity (2nd ed.) San Francisco: Jossey-Bass Inc

Conyers, L M., Schaefer Enright, M., & Strauser, D R (1998) Applying self efficacy theory to

counseling college students with disabilities Journal of Applied Rehabilitation Counseling, 29, 25-30.

Dillon, M R (2007) Creating supports for college students with asperger syndrome through collaboration College Student

Journal, 41, 499-504.

Durlak, C., Rose, E., & Bursuck, W (1994) Preparing high school students with learning disabilities for the transition to

postsecondary education: Teaching skills of self-determination Journal of Learning Disabilities, 27(1), 51-59 Frith, U (2003) Autism: Explaining the enigma (2nd ed.) Oxford: Blackwell

Gibbs, A (2007, Winter) Focus groups Social Research Update, 19 Retrieved January 15, 2007, fromhttp://www.soc.surrey.ac.uk/sru/SRU19.html

Hadley, W M., Twale, D J., & Evans, J (2003) First-year students with specific learning disabilities: Transition and

adjustment to academic expectations Journal of College Orientation and Transition, 11(1), 35-46.

Jehn, K A., & Doucet, L (1996) Developing categories from interview data: Text analysis and multidimensional scaling,

part 1 Anthropology Methods Journal, 8(2), 15-16.

Kern, J K., Trivedi, M H., Garver, C R., Grannemann, B D., Andrews, A A., Savla, J S., et al (2006) The pattern of

sensory processing abnormalities in autism Autism, 10, 480-494.

Killiany, R J., Moore, T L., Rehbein, L., & Moss, M B (2005) Memory and executive functions in autism In M

Bauman & T L Kemper (Eds.), The neurobiology of autism (pp 59-64) Baltimore: Johns Hopkins University Press Klin, A., F.R Volkmar, F R., & Sparrow, S S (Eds.) (2000) Asperger syndrome (pp 125-155) New York: Guilford

Press

Krueger, R A., & Casey, M A (2000) Focus groups: A practical guide for applied research (3rd ed.) Thousand Oaks,CA: Sage Publications

Landa, R (2000) Social language use in asperger syndrome In A Klin, F R Volkmar, & S S Sparrow (Eds.), Asperger

syndrome (pp 125-155) New York: Guilford Press.

Lynch, R., & Gussel, L (1992) Disclosure and self-advocacy regarding disability-related needs:

Strategies to maximize integration in postsecondary education Journal of Counseling and Development, 74, 352-357 Madaus, J W (2005) Navigating the college transition maze: A guide for students with learning disabilities Teaching

Rothstein, L (2003) Disabilities and higher education: A crystal ball? Change, 35, 39-40.

Sansosti, F J., & Powell-Smith, K A (2006) High functioning autism/asperger’s syndrome In G G Bear & K M

Minke (Eds.), Children’s needs III: Development, prevention, and intervention Washington, DC: National

Association of School Psychologists

Thomas, S (2000) College students and disability law Journal of Special Education, 33, 248-257.

Vaughn, S., Schumm, J., & Sinagub, J (1996) Focus group interviews in education and psychology Thousand Oaks,

CA: SAGE Publications

About the Authors

Julie Q Morrison, Ph.D received her B.S degree in Psychology from St Louis University, her M.A inExperimental/General Psychology from Xavier University (Cincinnati, OH), and her Ph.D in School Psychology from theUniversity of Cincinnati Her experiences include working as a school psychologist for Cincinnati Public Schools Districtand serving on the multidisciplinary Autism Spectrum Support Team for the district Dr Morrison is currently an assistantprofessor of school psychology at the University of Cincinnati Her research interests include evaluating the effectiveness

of universal supports and targeted interventions to address academic and behavioral needs of school-age children andyouth She can be reached by email at: Julie.Morrison@uc.edu

Frank J Sansosti, Ph.D., NCSP received his B.S degree in Psychology from the University of Pittsburgh and Ph.D fromthe University of South Florida His experience includes working as a school psychologist and district autism consultantfor the District School Board of Pasco County in west central Florida, providing coaching and technical assistance forintervention and best practice approaches for students with autism spectrum disorders (ASD) in inclusive settings He iscurrently an assistant professor of school psychology in the Educational Foundations and Special Services department atKent State University His research and professional interests focus on the development and implementation of behavioraland social skills interventions for individuals with ASD, as well as best practice approaches for the inclusion and transition

of individuals with low-incidence disabilities He can be reached by email at: fsansost@kent.edu

Wanda M Hadley received her B.S and M.A degrees in Education from Ohio State University and her Ph.D from theUniversity of Dayton Her experience includes working as an administrator for the University of Dayton and Central StateUniversity She is currently an administrator and adjunct professor in the College of Education at Central State University.Her research interests include the academic adjustment issues first-year college students with learning disabilitiesexperience in their transition to college She can be reached by email at: wandamhadley@yahoo.com

Developing Autonomy

3.1 Describe some of the challenges your son/daughter (or student you work with) will likely encounter in reducing his or her reliance on parents, peers, and others to meet needs and accomplish personal objectives

3.2 Describe some of the challenges your son/daughter (or student you work with) will likely encounter in reducing his or her reliance on parents, peers, and others for approval and reassurance

A prompt to discuss the supports or accommodations needed to address these challenges was provided for each of these six initial prompts

Relentless Optimism:

Inclusive Postsecondary Opportunities for

Students with Significant Disabilities

Julie Causton-Theoharis Christine Ashby Nicole DeClouette Syracuse University

Abstract

Some universities and colleges across the country are creating opportunities for young adults with significant disabilities tomeaningfully participate in postsecondary education Students with significant disabilities are now attending college classeswith peers without disabilities either during or after high school In this qualitative study we investigate two programshoused in Central New York that support students labeled with significant disabilities (i.e., cognitive disabilities, intellectualdisabilities, traumatic brain injury, and autism) so they can attend college classes in inclusive settings For this study weinterviewed major stakeholders in these programs and asked research questions focused on the benefits and obstacles toimplementation Our findings suggest that these programs benefit students with disabilities, college classmates, andprofessors The obstacles to these programs were institutional, logistical, and attitudinal in nature We conclude bypresenting the implications of these findings and raise questions for future research

Michael was institutionalized his whole life and when the local institution closed that’s when he came out I can’t even imagine what it would be like for him because he was not seen to have any communication He was seen to have behavioral problems He was not seen in a positive way And then when he got out of the institution he actually figured out what kind of communication device would work for him He researched it; he got Medicaid to buy it This is not an unintelligent man He never had any education; he had nothing there He came to me saying that college for him would be

a dream come true He got into the college and he surprised everyone No one ever thought he was intelligent before this time He did a presentation to his religion class at the University at the end of the semester It was amazing He had gained such a deep understanding of the content! So when you give somebody the opportunity to do something, I mean so many people thought he couldn’t communicate and now he’s reading, he’s writing, he’s presenting, he’s doing all these things I would like the people from the institution to see him today (Theresa, Program Coordinator)

Traditionally, young adults who have been labeled as having significant disabilities such as autism, cognitiveimpairments, intellectual disabilities, and traumatic brain injury have not been given the option of participating in andbenefiting from a postsecondary education In the above anecdote Michael, who has a significant disability, has been giventhat opportunity The term significant disability can be defined as:

An individual who requires extensive ongoing support in more than one major life activity to participate in integratedcommunity settings and to enjoy a quality of life that is available to citizens with fewer or no disability Support may berequired for life activities such as mobility, communication, self-care, and learning as necessary for independent living,employment, and self-sufficiency (TASH, 2000)

The State of Postsecondary Education for Students with Significant DisabilitiesMost students with significant disabilities remain in high school until age 21, while most of their peers withoutdisabilities move on to college This is common practice across the nation Over the past decade, some universities and

colleges across the country have developed opportunities for these individuals to meaningfully participate in postsecondaryeducation

As more students with significant disabilities are graduating high school, college is being considered an option.Postsecondary education has become an increasingly important prerequisite to independent adult living (Zafft, Hart &Zimbrich, 2004) Intellectual stimulation, emotional growth, academic gains, an expanded social network, increased self-confidence, and independence are just some of the aspects that many college students enjoy Completion of nearly any type

of postsecondary education significantly improves an individual’s chances of securing meaningful employment after college.The recent interest in postsecondary education, specifically for this population, is largely due to the practice of inclusion

of students with disabilities at the elementary and secondary levels over the last two decades (Hart, Grigal, Sax, Martinez, &Will, 2006) Fueled by students who have goals to attend college, there is an increased expectation on the part of families(Hart, et al., 2006) to help these young adults continue to develop skills in inclusive postsecondary settings with same-agepeers In other words, as students with significant disabilities are included in K-12 education in increasing numbers, thenatural extension is to plan for inclusion in postsecondary settings Each year, an estimated 2,000-3,000 students withsignificant disabilities who are eligible for postsecondary schooling transition from high school (Hart, et al, 2006) Asincreasing numbers of students with significant disabilities continue to be included in K-12 education, it is likely the number

of programs or support services will continue to grow These programs are becoming increasingly prevalent nationally.There are over 100 programs currently in existence that support the participation of students with disabilities in highereducation (http://thinkcollege.net/programs/index.php, 2009) However, few of these programs focus on the education ofstudents with more significant disabilities Schmidt (2005) estimates that there are at least 50 identified college programs thatsupport students with significant disabilities

Several research studies exist describing these programs and the experiences, challenges, and benefits of highereducation programs through the lens of the student and major stakeholders (Casale-Giannola & Wilson Kamens, 2006;Hamill, 2003; Mosoff, Greenholts, Hurtado & Jo, 2007; Neubert, Moon, & Grigal, 2004; Schmidt, 2005; Weir, 2004) Of theprograms that have been described in the literature, Hart, et al (2006) has defined three models: mixed/hybrid model,substantially separate model, and inclusive or individual support model See Table 1 for a description of each

Table 1

Program Types and Descriptions

Program Type Program Description

Substantially

separate program

Life skills or transition programs in community based settings

No sustained interaction with general student body

No option to take standard college courses with peers

Mixed program Transition programs housed on college campuses

Some interaction with nondisabled students (cafeteria, sporting events)

Option of taking college classes, but most curriculum is focused on life-skillsInclusive,

individual Students provided with individualized services & supports

support model Take college classes based on student choices and preferences

Inclusive Higher Education Support Models

This study seeks to examine the inclusive/individual support model programs at a mid-sized private University in theNorth East because these kinds of services allow for the most autonomy on the part of the student and maximizeopportunities for typical interaction with college peers The primary distinction between these services and the other programmodels lies in the “individual nature of the supports.” We consider these models “inclusive” by following the guidelinesoutlined in Hart et al (2006) Hart et al suggest that in “inclusive programs” students with significant disabilities select andenroll in college classes alongside peers without disabilities The supports start with the needs or the desires of the student, asopposed to programs that are designed for the needs of a group (Neubert & Moon, 2006) Each of the students attendingcollege with support discuss their personal goals for attending college, and then explore the course catalogue to determinewhich courses suit their interests and goals After they register, they are supported individually within the self-selected class

so that appropriate accommodations and modifications are made in order for each student to access the content andinstruction Hart et al (2006) suggest “programmatic support models” in which groups of students with disabilities takeclasses that are deemed to be suitable for students with disabilities Inclusive programs tend to be relatively new and to servefewer individuals than other service models (Hart, Mele-McCarthy, Pasternack, Zimbrich, & Parker, 2004) These types ofinclusive services tend to be more in line with best practices in K-12 settings with the goal being participation in regularclasses and in typical activities with flexible supports, and are, therefore, at the center of this research

While we have characterized these programs as mainly falling under the inclusive model, we do recognize elements ofthe mixed or hybrid models are present in that there is a program director specifically serving the needs of these students.Additionally there are times during the day when these students with disabilities meet together

In keeping with other forms of critical qualitative research, this study is grounded on the assumption that all students,regardless of perceived abilities or disabilities, should be entitled to higher education with peers without disabilities We didnot set out to determine the feasibility of inclusive higher education or to evaluate the success or failure of particularprograms Rather, starting from the position that access to inclusive higher education is both entirely possible and the right ofall, this study seeks to study two existing programs - through the perspectives of key stakeholders - that target thisunderserved and often marginalized population

In this study we investigate two existing postsecondary programs at the same University in Central New York that offerservices for students with significant disabilities We seek to gain multiple perspectives from a variety of stakeholders inthese programs: founders, directors, teachers, professors, and parents to get multiple perspectives on these services Thespecific research questions are:

What are the benefits and major accomplishments of these programs?

What obstacles exist to implementing these programs?

Research Methods

Data Sources

In order to explore the research questions stated above, we developed a qualitative study (Bogdan & Biklen, 2003;Denzin & Lincoln, 2000) employing in-depth interviewing of the major stakeholders Using purposeful sampling (Bogdan &Biklen, 2003), we selected interviewees who represented the different groups involved (parents of program participants,program staff, program developers, and University faculty) In the tradition of purposeful sampling, we did not select theparticipants in a random manner Rather, we selected those that we deemed most able to speak to the complexities of each of

the programs We initially asked potential participants over e-mail if they were willing to be involved in this study, andsecured those interested by setting-up interviews at which point the participants signed an agreement consistent with IRBprotocol When looking at the pool of potential participants we gave preference to those who are currently involved with thetwo inclusive programs as well as any individuals who were part of the initial program design In that way, we hoped toreflect the development of the programs as well as the current situation These eight participants are listed in the Table 2.Each participant was interviewed at least once Interviews lasted from 45 minutes to two hours All names have beenreplaced by pseudonyms for confidentiality In keeping with the nature of qualitative research, the interviews were in-depthand open-ended While we developed a list of general interview questions (see Table 3), each interview varied in response tothe direction of the person being interviewed (Fontana & Frey, 2000) All interviews were digitally recorded and transcribedlater.

One group of potential participants that was not included in this initial study was students with significant disabilities

We wanted this initial study to focus on the full exploration of the context of these programs and the programmaticdevelopment We recognize the absence of student voice and in the continuation of this research we are focusing solely onthe perspectives of the students enrolled in these programs

Table 2

Participants

Table 3

Sample Interview Questions

Participants Role Background of the Participant Program Currently

affiliatedDanielle Program

Coordinator

Certified special education teacher hired

by city school district to support

students on the campus

Program 1 Yes

Kate Parent &

Co-founder

Parent of a child in program 1 and

Program 2 Board member of Program 1

Certified special education teacher

Doctoral candidate at University when

Certified special education teacher

Doctoral candidate at University when

affiliated

Program 1 No

Sarah Program Teacher Certified special education teacher

Doctoral candidate at University

Program 2 Yes

Theresa Program

Coordinator

Director of adult services agency Program 2 Yes

Meg University Faculty

Sample Interview Questions

1 Describe your involvement with the program

2 How long have you been involved with this program?

3 What are the strengths of the program?

4 What barriers to implementation currently exist here? What areas of need have emerged?

5 Describe any key interactions with university staff and professors

6 How have you worked through difficulties?

7 How have these programs grown and changed over the years?

8 How long has the program been in existence?

9 Why did this program begin?

10 Tell us a story that encapsulates why this program is important

11 What questions about K-12 education emerge as a result of these programs?

12 How have your ideas about inclusive higher education changed as a result of your involvement

with this program?

13 Tell us about the student’s participation in your class

Data Analysis

Data analysis began by deductively coding the interviews according to the stated research questions Then, proceedinginductively we sought connections between categories and subcategories to further refine our analysis (Strauss & Corbin,1998) Each researcher independently coded two interviews to determine a tentative list of codes These codes were thenshared with all researchers, collapsed, and refined to arrive at the final list of codes each researcher applied to the remaininginterview transcripts Then we reviewed all coded data to determine commonly recurring codes and overarching themes,presented as findings below After data was collected and themes were established, we conducted member checks by sharing

an initial draft of the paper to all participants We received written clarification and feedback and incorporated it into thefinal manuscript We begin, however, by providing a brief overview of the two inclusive higher education programs to putthe findings in context

Description of the Programs

Program One

Frustrated with limited postsecondary options, two parents organized and sought support to “dream of somethingdifferent” for their child as she prepared to graduate high school The “dream” transpired into Program One in 1999, a

collaboration between a four-year, private University and an urban city school district Program One supports six studentswho are generally not considered traditional college students They are students with significant intellectual disabilities, most

of whom received their secondary educations in self-contained or community-based settings prior to college A number ofthe students do not use verbal speech, but instead type to communicate

All students with significant disabilities are eligible to receive special educational services under the Individuals withDisabilities Education Act (IDEA) until age 21 For most students, this means they remain in high school until age 21 or theyattend segregated day programs exclusively for young adults with disabilities Program One students, however, work onacademic goals from their Individualized Education Plans (IEPs) within the context of academic courses taught on theUniversity campus Students choose from academic courses across University disciplines, departments, and schools.Program One students also spend several hours per week doing recreational activities with matriculated University studentsfrom the School of Education

The local school district provides a certified special education teacher who coordinates the program while providingcurricular modifications for students and supporting a staff of six paraprofessionals The paraprofessionals often accompanystudents to class for note-taking and communication support The school district provides transportation to and from campusand it purchases books for students The University provides a graduate assistant from the School of Education to coordinaterecreational partnerships with undergraduate education students, office space, and the use of campus facilities Universityprofessors and graduate teaching assistants across disciplines and departments serve integral roles as members of theinstructional team Students take courses in typical college classes along with the general college population Students’participation in Program One ends when they walk the graduation stage with their peers from the University

Program Two

There are even fewer programs that support adult learners (older than 21 years) with significant disabilities in collegesettings (Hart et al 2006), yet for many students the desire to keep learning does not end when they “age-out” of the publicschool supported Program One, or any other program that supports students until age 21 Program Two was created in 2006when former Program One students realized that their educational opportunities at the University were about to end In thiscase, the adult learners themselves provided the push to get this program started by requesting a continued opportunity toattend college, and the director of the adult service agency responded by writing a five-year renewable contract to getfunding for these services Program Two, thus, is a collaboration between the same private University as Program One and

an adult service agency, and it provides educational support to students after they reach age 21.The adult service agencyprovides a certified special education teacher who coordinates the support of six adult learners in auditing college coursesacross disciplines Additionally, six campus mentors are provided who serve as paraprofessionals providing support both inclasses and navigating the campus

The creation of Program Two was possible, in many ways, because Program One paved the way Many of the lessonslearned from facing the obstacles presented to Program One were shared with Program Two developers in the initialplanning and implementation stages Although they both serve students with significant intellectual disabilities, the ages ofthe students and the funding streams to support these programs differ While it is possible for a student who has participated

in Program One to later be enrolled in Program Two, these programs are not consecutive—meaning it is not a given thatafter completing one program the student moves into the second In the history of these two programs, one student hasparticipated in both programs

Findings

In response to the research questions, several themes emerged that merit further exploration These themes are organizedaround the research questions They are: (a) benefits of these services, and (b) obstacles to implementation Each is discussedbelow

Benefits of These Programs

Our research suggests that major stakeholders perceive these programs as making a difference in the lives of the students

as they are allowed access to higher education These programs center on creating opportunities for students who havetraditionally been rejected from University education and on breaking down stereotypes and assumptions about people whoare labeled as having significant disabilities When answering the first research question (regarding the benefits of theseinclusive postsecondary programs) three types of perceived benefits emerged: (a) benefits to students with disabilities, (b)benefits to college classmates, and (c) benefits to college faculty Each of these themes is listed below with illustrations fromthe data Additionally, these themes are listed in Table 4

Table 4

Key Findings

Benefits of Programs

Benefits to Students with

Disabilities

Student growth

New dreams and possibilities

Ordinary moments: Opportunities for friendshipBenefits to College Classmates Learning to include

Natural interactionBenefits to College Faculty Planning for instruction

Walking the talk

Obstacles to Implementation

Institutional and Logistical

Obstacles

Pretend services: Course selection and auditing

Scheduling

Paraprofessionals

Other logistical obstacles

Access to parking, library, typical student servicesAttitudinal Obstacles Faculty resistance

The problem with special

Arranged marriages: Regulating friendships

Benefits to Students with Disabilities

Student growth According to the stakeholders in this study, individual student growth was one of the biggest perceived

benefits of attending college classes Danielle, one of the program coordinators shared a story of Dan, a student who is justbeginning these services and his reaction to being in college after years of “being in hell:”

He began in January He is now in his second semester and he’s still saying to me things like, “I just can’t believe whatgood care you take of me I just can’t believe how focused you are of my needs I can’t believe I’m sitting in a collegeclass.” So he’s numb at the difference between the life styles he has led in his academic years

Many of the stakeholders spoke of a shift that took place as the students begin to identify themselves as learners, somefor the first time For most of the students served, their K-12 experience was marked by segregation and limited access togeneral education classrooms Simply being part of a college classroom was a striking juxtaposition to prior experiences Thenext two quotes illustrate these findings According to Danielle:

I’m really happy about seeing students with disabilities taking themselves seriously as learners I’m seeing them face thathorrible identity that they had been given as not worthy of instruction and not able to learn, and take some academicrisks One of the students just showed me her first paper for the semester and I think she saw the benefits of sustainingattention to an academic task that is hard…I see students really being much more proud, much more full So givingthemselves another chance of a new definition and building on strengths rather than identifying by what they can’t do.That is the real power here

The certified special education teacher from Program Two, Sarah, speaks of the “work it takes” as students redefinethemselves as individuals who can learn, complete assignments, and can do well in college Sarah sees the experience ofapplying oneself to a difficult task and completing it successfully as the pathway to growth in these students, and in moststudents:

They stare down their anxieties and their self-doubt They’ve worked hard here It’s nothing special about taking a classper se or memorizing all those discreet elements of history It’s the effort you put into it, the way you applied yourself,the growth that came out of putting yourself through something None of us remember the discreet elements of WorldWar II, but did we become different people for having moved through our undergraduate years? And that’s definitelywhat I’ve seen happen for our students too

Program Two coordinator, Theresa, works with the families, and she spoke about the shift she has seen in theperspectives of family members:

I’ve had families say, “My God I knew it was in her We never saw it so clearly.” So it’s incredible when you can reallyput someone in a place with an expectation and they can do it It’s like you have to change what you do and think aboutall people with disabilities Now we have to presume competence It is just criminal if we don’t What I learned is thatlearning happens when you just look to the mind inside and just kind of ignore the outward appearances of the disability.Not only do students see themselves differently after exposure to college classes, but their families see the changes too.These two programs have allowed students with disabilities to redefine themselves as learners and others to see them ascompetent, contributing members of the University community These shifts in perception echo the findings of Mosoff et al.(2007), who identifies “confidence” as one of the major components of inclusive postsecondary education

New dreams and possibilities Thomas, a former University Program One coordinator spoke of the lack of hope that

many students with disabilities have after high school due to lack of opportunity He shared that the existence of theseservices lends itself to a new possibility and hope for many of these students:

The biggest strength of the program is that it happened at all It’s here, so there’s the possibility There’s no possibility

of friendship, of meaningful participation, of inclusion in a community if the people aren’t even there That’s itsbiggest strength, that it creates the possibility And now we have a vision of what this could mean for both populations

of students who we keep apart so often in our society

This hope of possibility was echoed by a parent, Kate, who has a student in the program She has presented at aconference for people who have the same disability as her daughter, and she spoke of being struck by the parental response

as she shared her daughter’s inclusive college experience:

When we were asked to talk at the Rett syndrome conference and we went there and people were like, “What’s out therefor adult services? What do you do when this little yellow school bus doesn’t come?” And what we were shown was a

day treatment program where they go every day and it seems nice, and it is nice… Then you show the video that the[University] students made of [my daughter] having a beer at one of the bars here with her classmates and they just burstout crying They went, “Oh my God, she looks so normal drinking that beer.” And just…it just gets people to just dreamthat this is possible Choices are here.

The very existence of these programs is a big shift for students and their families Many parents and individuals withdisabilities could not imagine dreams of college until they learned of these programs Once the doors to the Universityopened to them, many of the stakeholders spoke about friendship as the next big dream that students had as they came tocollege This dream was realized in many situations

Ordinary moments: Opportunities for friendship The opportunity for social interaction with peers is a benefit that is

consistent in the literature on inclusive higher education programs Several researchers (Casale-Giannola & Wilson Kamens,2006; Hamill 2003) have found that friendships have formed from inclusive college experiences Danielle, Program Onecoordinator spoke of an experience that came out of an ordinary moment of humanity that turned into a true friendship Shespoke about Sam, a very intelligent student with autism with challenging behavior who uses Facilitated Communication

He took an anthropology class during his first year here and it was his first big lecture, he could not stay in the biglecture hall he was making noises and looked anxious I left so we didn’t embarrass him While we were out [in thehallway], the teaching assistant invited us in to her small group We got to the small group and we went around the roomand Sam typed the following on his communication device [by means of an introduction to the rest of the class], “MYNAME MEANS THE KING OF KINGS AND I’M TRYING TO LIVE UP TO THAT REPUTATION” And I[Danielle] said, “Oh, by the way, Sam has autism and so sometimes he needs to leave the room and move a little bit andhope it doesn’t bother you But if anybody wants to ask questions after class that would be cool.” This guy stayed afterclass and sat down with Sam and said, “I’m Joshua.” He saw the person He became the first friend that Sam ever hadand they have had that friendship for a year and a half His personhood became illuminated His full personhood whichsort of rearranged autism as certainly a challenge but it wasn’t all of who he was So the friendship came out of justordinary moments

When Danielle spoke about Sam’s experience she added that that first interaction extended to going out to lunch, doingthings together on the weekend, and celebrating together at college graduation She felt that this friendship was real andgenuine and would not have occurred if Sam were not in this college classroom She felt that it was as beneficial to Sam as itwas to Joshua

Benefits to College Classmates

Learning to include According to the stakeholders interviewed, these educational experiences clearly benefit the

students (with disabilities) who enroll in the college classes, but these opportunities also benefit their University classmates.The students in the classrooms are now sitting beside people who traditionally have not been part of the academiccommunity They are learning alongside peers that they may have not had access to during their earlier schooling experienceand many of the stakeholders report that this experience has an effect Danielle spoke of the reaction other college studentshad to the presence of a student with a disability:

I asked the other students, “You may know that a [program one] student was in your class, how did this affect yourlearning?” In most cases the students will say, “I’m loving it Now I see diversity Now I really understand more aboutpeople with disabilities and it’s not that they can’t learn it’s just that they learn differently and at a different pace.” I haveseen enough of those results to feel like we’re making an impact

Another perspective came from a professor in the school of education Meg teaches future science teachers She spoke ofthe impact having a student from one of the programs in her class had on the other students:

It’s also good for the other students in the class Now even before they are entering the other classes that talk aboutdifference, differentiation, and inclusive practice, they have to see how I am including [this student] They have toparticipate in including her, and I think that is good for them

Natural interaction Another professor, Sunny, shared the opportunities for natural peer interaction that occurred during

her introduction to special education course Dianna, a student in Program One, came to Sunny and suggested that her

teaching assistant not sit near her during class, because she felt it got in the way of spending time directly with peers duringcooperative group activities

I told Dianna that I was OK with the teaching assistant moving away from her Because I knew that Dianna was right Itwas going to make the interactions more natural What I noticed, was that she was not only recognizing the importance

of peer interactions, but it was the first time I saw her advocating for herself

Colleen, a former Program One coordinator reflected on an experience she designed that would allow students from theUniversity to spend time with a student from the program doing recreational activities or just “hanging out together.” Thesestudents were asked to reflect on their experiences each week

What the University gained from having these students was “typical” students would have the opportunity to spend timewith a peer who has a disability and they could learn just by being with that person So by having the opportunity tointeract with them over time through a focused experience and that’s what I like about service learning is that when it istruly done correctly and when you are really doing reflective practice, students can learn much more than they wouldlearn if they were reading about people with disabilities

Benefits to College Faculty

When Meg, a University faculty member who supports a student with disabilities in her science classroom, was askedabout the positives of these experiences her response follows:

There are lots and lots of positives So many that I can’t even…if you were to ask me the reverse questions what wouldthe negatives be I wouldn’t have an answer for you Part of the reason I think it is positive for her [the student] is it’spretty clear she hasn’t had a lot of science experiences ever And so her just being able to have a chance to think and getengaged about these topics she smiles pretty much throughout the whole time she is in my class She participatesverbally in my class She asks questions and she tries to engage with other students Those are all terrific things

Planning for instruction Interestingly, Meg spoke at length about how having a student with a significant disability in

her classroom made her a more effective instructor She spoke of being forced to think ahead about what she expects socially

in the classroom and articulating that to everyone She stated that now she has to be clear with, “What my expectations arefor bringing notes to class and bringing materials to class.” This new transparency is not just helpful for the student that shesupports in class, but for all of the college students:

For me she helps me think about what kind of things she is going to need to be successful and… oh yeah those are thingsall my students need to be successful So me being sure that I have been clear about class agendas, me being sure that I

am clear about what my expectations are for class behavior, for how we interact with each other, for learning outcomesbeing explicit about all of those things They don’t just help her, they help everybody

Walking the talk This professor also spoke of finally feeling like she is “walking the talk.” This University is steeped in

the philosophy of inclusion Inclusion is a central component to all of the education courses offered in the school ofeducation She explained that she was finally practicing what she preached Meg described the effect of these experiences onthe doctoral students who help her teach the course:

These issues of inclusion they have taken courses about aren’t esoteric any more, now they are real and we can’t pretendthat we just espouse inclusive practice; we can’t talk about inclusive practice as if it is something people should do Wehave to do it We have to walk the talk and that’s a really powerful thing… If I had a chance to give a message to higher

ed folk about this program I guess my bottom line would be it’s a win-win Nobody loses here I can no longer imagineworking in a place where this wouldn’t be possible

Similarly, Sunny described her excitement about modeling for future inclusive educators the types of instruction that sheexpects her students to integrate into their own teaching

When Dianna came into this classroom, I knew I had the opportunity to provide to my students a living example ofinclusive education in action… I knew I shouldn’t screw this one up [laughing] I had to think deeply about how tocreate meaningful access to the course content for all students (including Dianna) and make visible my pedagogicaldecision making This was all done without isolating or singling out Dianna in any way… not an easy task

When Kate, the parent and co-founder of Program One, was asked about the reaction of University professors to havingstudents with significant disabilities attending their classes, she reported she was surprised at how open most people were:

I thought many, many of the University professors and instructors that we worked with were pretty open minded andallowed this to happen… There have been some professors who have been so natural, so welcoming, so appropriate intheir behavior, expecting that she will make an assessment of them in their teaching techniques “How can I do thisbetter?” Looking at her, saying, “Oh my God, I should get a textbook that has bigger print.” So we’ve had unbelievableexperiences with teachers One teacher at an exit interview said to [my daughter], “Did you enjoy the course?” Well, Ithink she said “no,” which prefaced the next question, “Why?” and my daughter said, “It was too easy.” I know thatprofessor kind of walked out of the lunchroom, shaking her head going, “Oh my God I just got told by a …she didn’tlike my course It was too easy.”

The above quote illustrates not only the openness of some University professors, but also hints at the learning that took place forsome of these faculty members Interactions with these students changed the way that these faculty members thought about theirteaching and instruction

The previous section described many of the positive changes these programs have brought to this University Thestakeholders interviewed felt that these programs added value to the University Next we will focus on the obstacles thesestakeholders encountered in the implementation of these programs

Obstacles to Implementation

In response to the second major research question, it is clear that many obstacles continue to exist in this work:institutional/logistical obstacles and attitudinal obstacles Institutional/logistical obstacles include course selection andauditing courses instead of taking courses for credit, parking, transportation, and scheduling difficulties Attitudinal obstaclesinclude factors such as fear and faculty resistance (Table 4) It is important to note that none of the stakeholders interviewed

or the authors of this article contend that these obstacles are reasons not to engage in inclusive higher education Rather, theyare obstacles that need to be addressed to further enrich and strengthen the experience of higher education for students withdisabilities

Institutional and Logistical Obstacles

Pretend services: Course selection and auditing Engagement in academic coursework with typical peers, across

disciplines, departments, and schools is a key component of both programs Therefore selection and registration in courses ispivotal Both programs operate from a perspective of student-centered, individualized instruction, and course selection isdriven by students’ interest However, institutional and logistical obstacles complicate course selection Colleen describesone way that course selection was hindered due to the difficulties presented with having leveled courses:

A lot of courses we were having to target were the 100 and 200 level courses Because we couldn’t get them [thestudents] into the upper level courses, a lot of those had prerequisites and required pretty specialized knowledge

This then limited the students to lower division courses, those frequently taken by freshmen and sophomoreundergraduates While that may not seem problematic, those introductory courses are often quite large, makingindividualized supports within a supportive classroom community less probable

Course selection is tenuous for other reasons as well For Program Two, the students register through a departmentwithin the larger University that supports part-time and non-traditional learners This unit has erected a registration barrierthat impede student access Sarah, a program teacher, describes her frustration with this registration policy:

They have put a hold on our registration By the time these six students come to register for a class they are being toldthat they have to have clearance for registration by going to see the professor They have to go get audit permission from

a professor first

This requirement of faculty permission was a thorn in the side of all participants interviewed and demonstrates theinstitutional obstacles to inclusive higher education Kate, whose daughter has been enrolled in both programs, states:

We have to ask a professor if it’s okay if we’re in the class? That ain’t happening for my kid It’s clearly on the books

We aren’t going to ask We won’t do it No other student does that We’re not doing it

Her frustration with this logistical barrier is clearly evident It seems that she objected to having to ask permission foreach class because student without disabilities are not required to do the same.

An additional challenge inherent in the implementation of both programs is that students are not allowed to enroll incourses for credit Instead, they audit courses with the permission of the instructor Similar to the findings of Hamill (2003),despite the fact that they attend the classes, complete the assignments, and take the exams, these students do not earn officialcredit for their work Sarah explains:

The audit thing is very confusing because our students attempt to do all the assignments and they do all the exams, andthey do all the papers I swear they’re the hardest working folks in the room So the audit is a barrier - it sets the public

up for certain assumptions that they’re not going to do the work

Program coordinators and parents hope for a day when students will have the opportunity to earn credit for their efforts

In the words of Theresa, Program Two coordinator, “it’s somewhat of a pretend service because people aren’t taking classesfor credit, they are not working on degree programs …It’s unfortunate that people are putting in so much work but notgetting full credit or benefit for that.”

Scheduling In this section, we explore other programmatic constraints that emerge both out of University policies of

rules, but also from the structure of the programs themselves Earlier we discussed the obstacles inherent in course selectionand registration for students in both programs There is a related logistical barrier for students in Program One that furthercomplicates this process As this program reflects collaboration between the University and the local city school district, thestudents are transported to the University in accordance with the public school schedule Coordinator, Colleen, explains:

It was difficult getting in classes and organizing the schedules because one of the constraints is that we have to work onthe city school’s timeframe So when you have got the students there at 7 in the morning, and I’m sorry but there’s not awhole lot of undergraduate students that are wandering around the union It’s just not like what happens when you’re afirst year or sophomore student They were going home about the time that things were really happening on campus.Program One students arrive at campus first thing in the morning and are bussed home by early afternoon, just whencampus is coming alive This poses a challenge both to the selection of courses and to the development of socialopportunities on campus The students in Program One miss many of the opportunities for nonacademic interaction with thestudents on campus While the program has both academic and social development functions, if students are not physically

on campus during the times when typical University students are gathering, opportunities are lost

Paraprofessionals A second logistical and structural barrier also relates to the opportunities for social growth This is

the utilization of paraprofessionals to support the students while on campus Although Danielle, Program One coordinatorand teacher, shared that intensive paraprofessional support was a positive aspect of this program, other stakeholders did notsee this type and intensity of support as positive, but saw it instead as a barrier Thomas, a former Program One Universitycoordinator argues:

The other barrier that was structured into the program, from my point of view, was the heavy reliance onparaprofessionals There were paraprofessionals at the time working on the staff that were really enjoying the freedom ofthe campus in a way that wasn’t necessarily getting their jobs done You know, they would be using the computer labsfor personal purposes and stuff like that instead of supporting students Also the fact that we felt like a student wouldneed a person kind of attached to them all the time There was this concern about safety This is a big space where theycould go all sorts of places It felt like the student could never be on his or her own No one ever felt that that was safe Itcreated this atmosphere, to me, that really separated the students even more, and it was done with the best of intentions,but you had this kind of world in which this student always had a ‘zoo keeper’ along with them

The negative impact of paraprofessional support on the social interaction of peers with disabilities in K-12 education hasbeen well documented (Causton-Theoharis & Malmgren, 2005; Giangreco, Edelman, Luiselli & MacFarland, 1997;Malmgren & Causton-Theoharis, 2006) Our findings suggest those concerns are not confined to the school-age arena andemerge in higher education as well Students in both programs receive support from paraprofessionals, referred to as

“teaching assistants” in Program One and “campus mentors” in Program Two While the name differs, the function isessentially the same - to support the students’ access to the academic curriculum and to implement any necessary adaptationsand accommodations In some cases, those supporting adults are also called on to provide communication support For the

teaching assistants in Program One, many of them came to this program from positions in the K-12 public schools, where theexpectations and responsibilities were vastly different That role shift was not always easy According to Colleen:

When you have been in a world that tells you that your job is to control and contain and supervise and all of a suddenyou’re asked to support that’s a very different role That was a difficult shift for people And also having the whole widecampus with no four walls to contain you I think that was difficult for them as well So what very quickly happened is itturned into a program with everybody sitting in the Union together at the same time eating their lunches…I mean wewere back to that segregated table in the cafeteria you know

Her frustration at the drift toward the familiar, the segregated, and the institutional, is evident Colleen argues that inresponse to a new environment and new freedoms, many paraprofessionals demonstrated similar institutional approaches tothe education of students with disabilities that had marked so many of these student’s K-12 histories

The stakeholders saw the gathering of two or more students with disabilities in the same place in very disparate ways.Danielle, Program One coordinator saw value in having students with disabilities congregate together at key times foraffiliation, socialization and sharing their experiences Conversely, the teacher and coordinator of Program Two both believethat students with disabilities should not be together to avoid the stigma of the collective Because of this belief and as a way

to avoid the practices of disability specific congregation, the coordinator of Program Two wrote into the funding request thatcampus mentors would not be paid if students with disabilities were congregating together

Other logistical obstacles In addition to classroom support and modifications, other institutional hoops got in the way of

student access to the campus community For example, it is difficult for students to obtain identification cards, which allowthem sufficient access to check books from the library Parking is also problematic, especially for students in Program Two,who do not arrive on city school buses Science education professor, Meg, describes:

This student, she’s got to walk like 15 minutes to get to my class because of things like parking won’t let her come close.Why? Why can’t the University permit her and her paraprofessional to have access to that parking lot for two hourstwice a week? Why is that an issue that she and her paraprofessional have to work out? Those kinds of things are barriersfor my student

Obtaining library cards and finding parking are details that all undergraduates must address, but for these students manylogistical obstacles have already been overcome For example, students in Program One walk in graduation with their peers,something that was denied to earlier program participants For these students, who challenge the traditional ways of being acollege student, every detail is a new obstacle to consider But Meg describes a hopeful vision:

I think if these kinds of programs take hold and become more widely known, I would like to think that the structuralkinds of barriers will begin to be taken care of and better in more systematic ways so that more folks feel comfortable inthinking about including these folks in their courses

Meg identifies the importance of time and increased prevalence of programs such as those described in this study to shiftthe conversation around access to higher education and to eradicate some of the structural and institutional obstacles that stillexist However, she also highlights the importance of faculty comfort as it relates to thoughtful inclusion, concepts that aremore attitudinal than structural This leads us to the last set of obstacles to implementation

Attitudinal Obstacles

Structural and organizational obstacles have had a significant impact on the development and functioning of these twoprograms Perhaps, however, the biggest barrier to implementation of inclusive higher education reform is attitude Similar toother studies (Hart, et al., 2004), the participants in this study identified attitudinal issues as primary obstacles

Faculty resistance Some of the attitudinal obstacles surfaced when students from these programs attempted to enroll in

courses It was in those moments that faculty insecurities and resistance to students with disabilities came to the forefront.Colleen describes the process of seeking permission to enroll students from Program One into University courses:

Some were surprised, many said I don’t think we’ll have enough room in the class, and it was really hard to push it Wetried to make it as easy as possible, saying “You’re not responsible for their [adaptations].” Okay, I realize now this is areal contradiction because we wanted them to have an academic experience but we also made it clear to these instructors

that you won’t have any direct responsibility for adapting the curriculum and grading their work or assessing them in anyway because that was the big fear A lot of folks felt like they weren’t qualified to do that nor did they have time.

Some faculty resistance was expressed in terms of logistical constraints - not enough space, not enough time Othersgave no reasons for their refusal, but simply denied the request for permission The program coordinators obviouslyanticipated some faculty resistance to the request for entrance and attempted to curtail that resistance by telling facultymembers that they did not have to assume responsibility for the students’ progress or accommodations The studyparticipants expressed discomfort at the negotiation and compromise required, but they also wanted these programs to moveforward and students to get access to academic experiences, even if they, as the coordinators and teachers, did the lions’share of the work These teacher deals (Biklen, 1992) are reminiscent of early efforts in K-12 inclusion, where specialeducation teachers bartered with general education teachers for the right of students with disabilities to attend generaleducation classes, as long as those special educators took care of the modifications and individualized supports

The problem with special Another barrier is the widely-held perception that it takes specialized skills and training to be

able to interact with and teach students with significant disabilities Sarah, the teacher for Program Two explains:

This place seems to think you need special knowledge to interact with these folks That’s what I hate about special ed Ialmost want to do away with the designation of special ed …that probably speaks to why having a special program,having to have special knowledge interferes with people’s ability to just include people as learners who want to learn Many participants spoke of the danger inherent in the concept “special.” This concept is similar to Mosoff et al.’s (2007)theme of authenticity, which she identifies as a key component of inclusive education Many, in our study, expressed a desire

to be seen as less “special” and more “typical.” As Sarah attests, having a special program makes many people think theyneed special training and if they do not have that specialized expertise, they are not equipped to teach Sadly, students withdisabilities miss out on the opportunity to receive instruction from knowledgeable faculty, who simply do not feel “special”enough Professor Meg describes how this worry over specialized information created unnecessary anxiety

I think some of the initial barriers I was worried about were of my own creation The student that is in my class currently

is diagnosed with cerebral palsy and I thought I don’t know anything about cerebral palsy, how am I going to supporther? And what I’m realizing is she is in my classes That all those perceived barriers in terms of being ignorant aboutcerebral palsy those were all mine Those didn’t have anything to do with the student or the system Those were excuses

if you will that I had made as to why I couldn’t possibly support this student The more I work with her the more Irealized, oh I do have the skills to be able to support her because I am already doing this for this kind of student In thepast I’ve had kids that had visual impairments and I made these accommodations No big deal I just do them again Meg aptly articulates what happens when those perceived fears and insecurities intersect with the experience of actually

supporting a student with a disability Once she got to know this student she realized that she does possess the necessary

skills It was fear, not lack of specialized knowledge, that was the true barrier

Arranged marriages: Regulating friendships The last attitudinal barrier relates to social interaction and friendship

development From the outset, both programs espoused academic and social gains as potential benefits The developers,therefore, created a peer mentor facet into the structure of the programs The students with disabilities are matched up withtypical college students and encouraged to engage in recreational and social activities Obviously, the hope is that these peermentoring relationships will develop into something more reciprocal and less programmed While that has happened in somecases, in many, the relationship ends once the required time has been spent Thomas describes this phenomenon:

I mean it’s not that there wasn’t caring, but it was not on an equal footing in any sense in terms of human relationship.Either, ‘I’m doing this as a favor for you,’ or ‘I’m doing this because I have to for a class,’ or ‘I’m doing this cause I’minterested in you,’ but they weren’t really ready to let them into their lives as people who would remain important tothem Now, there were a couple of exceptions to that, but that was the pattern It’s more like an arranged marriage The creation of opportunities for nonacademic peer interaction is vital to the goals of both programs However, this peermentoring structure can be seen as a barrier to the development of full inclusion in the social life of the campus if these

“arranged friendships” are the only source of peer interaction They often preclude the development of “real” friendship Despite these structural and attitudinal obstacles, the advocates and participants in these programs spoke with hope aboutthe possibilities for continued progress toward a more inclusive higher education community In the final section of the

paper, we consider how this new vision and the success of students in these inclusive higher education programs raisesquestions about both K-12 education and higher education for students with significant disabilities

Implications

As the push for inclusive opportunities at the postsecondary level continues to gain momentum and more students withsignificant disabilities are seeking enrollment in higher education, colleges and universities must keep pace with this growingtrend These two programs are representative of much that is happening around the country These two programs have notbeen presented as ideal or perfect examples of inclusive education at the college level However, they bring to light keyissues in the field of inclusive higher education and highlight the challenges still to be overcome Perhaps more importantly,they demonstrate the potential of inclusive higher education for individuals too often denied access to the experience ofcollege As our findings suggest, these programs offer many benefits to the individuals with disabilities, their collegeclassmates, and the professors who are teaching the courses Based on these findings and our own experiences, we believethat inclusive college programs should not only continue, but should be developed on all college and University campuses toexpand the options for students with significant disabilities post high school

As colleges and universities develop these programs, we see direct implications for future programs and those already inplace In learning about the obstacles and barriers, effort must go into elimination or mitigation of these issues Universitiesmust consider effective ways to allow for student choice in course selection and to give appropriate credit for classroomparticipation Secondly, universities must lift logistical obstacles to allow for access to appropriate scheduling experiences,in-class support, parking, library, and other campus services Lastly, and perhaps most importantly, the attitudes ofUniversity faculty and staff need to change to allow students’ access to class content in ways that are inclusive andthoughtful of natural peer connections

This study raises many questions The most pervasive of these relate to K-12 education All of the stakeholders poseddifferent versions of the question, “If we can demonstrate students’ success here in an inclusive setting, why are thesestudents receiving a segregated K-12 education? This puts a lot of pressure on educators during those younger years to step

up to the plate.” A University program coordinator, Colleen, shared her concerns with segregated K-12 experiences

These students have an uphill climb because they are excluded from the very thing that they need to succeed So early on

we need to think about that and stop excluding kids from the mainstream of the curriculum …We are deciding early onthat they will not be college material, when these are our opinions We need to help parents learn to see their children ascompetent learners and that they have a basic civil right to a decent education

Beyond, K-12, this study also has implications for higher education As more of these programs come into existence,some of the concepts at the foundation of higher education will be called into question First, the presence of these studentsforces higher educational institutions to wrestle with notions of meritocracy and gate keeping In other words, who is allowedinto this University and who is denied access completely? What role does admission serve? Second, the presence of thesenon-traditional students will call into question traditional forms of instruction Alternative teaching methods and lessons built

on multiple intelligences and universal design will be necessary to address the increasing diversity present in inclusive highereducation Third, the role the University plays with outside agencies or school districts will need to be considered WillUniversities continue to host these community agencies, or will Universities own the efforts themselves and support thestudents as complete members? Finally, will the Universities create or eliminate obstacles for these students?

Limitations and Future Research

Despite the interesting results from this study, it has limitations, and future research can expand on this investigation

in several ways First, as previously noted, we interviewed eight participants in two programs housed at one University,which limits generalizability Therefore, examining programs at other Universities and soliciting more participants couldallow for a more expansive analysis and comprehensive understanding of inclusive postsecondary education Second,student voices are absent from this study In an effort to garner information about the programs themselves and the

development of inclusive higher education opportunities we focused initially on the program staff, University faculty, andparents, who were all part of the conceptualization of the programs Focusing on the unfiltered voices of the students whoparticipate in these programs would yield very important findings We have already begun collecting interview data fromstudent participants for a second study Thirdly, we realize that this study has examined benefits to the students withdisabilities without getting information from the students themselves However, the stakeholders were able to report onthe positive changes they saw in students through their participation in these programs Further investigation wouldstrengthen these claims.

Other possible avenues for future research would be to examine the following questions that were raised by this study.How can we get around the obstacles to inclusive higher education? How can more students with significant disabilities getaccess to the opportunities afforded the students in these programs? How can universities manage services like these moreeffectively? How can these programs become less “special?”

In the words of Program Two coordinator, Theresa, “We’re just trying to do normal, ordinary, nothing special If we can

do normal and ordinary and nothing special than I think we’ve succeeded.” Danielle, Program One coordinator, speaks of thecontinued challenge of answering the questions raised by this study, “I know it takes a long time and you have to be patientand as [Burton] Blatt would say relentlessly optimistic.” As with any major reform effort, change often happens slower thanthose fighting for that change would like, but with continued effort and “relentless optimism” a new vision of higher education

is emerging where all, even those who have been traditionally excluded from halls of academia, have a right to belong, succeed,and learn

References

Biklen, D (1992) Schooling without labels Philadelphia, PA: Temple University Press.

Bogdan, R C & Biklen, S.K (2003) Qualitative research for education: An introduction to theories and methods, (4th Ed.).

Boston, MA: Allyn & Bacon

Casale-Giannola, D & Wilson Kamens, M (2006) Inclusion at a University: Experiences of a young woman with Down

syndrome Mental Retardation, 44(5): 344-352

Causton-Theoharis, J & Malmgren, K (2005) Increasing peer interactions for students with severe disabilities via

paraprofessional training Teaching Exceptional Children, 71, 2005.

Denzin, N.K & Lincoln, Y.S (2000) Handbook of qualitative research (2nd Ed.) Thousand Oaks, CA: Sage Publications

Giangreco, M., Edleman, S., Luiselli, T., MacFarland, S (1997) Helping or hovering? Effects of instructional assistant

proximity on students with disabilities Exceptional Children, 64(1), 7-18.

Fontana, A & Frey, J.H (2000) The interview: From structured questions to negotiated text In N.K Denzin & Y.S Lincoln

(Eds.), Handbook of qualitative research (2nd ed.) (pp.645-672) Thousand Oaks, California: Sage.

Hamill, L.B (2003) Going to college: The experiences of a young woman with Down syndrome Mental Retardation, 41(5),

340-353

Hart, D Grigal, M Sax, C Martinez, D Will, M (2006) Postsecondary education options for students with intellectual

disabilities Research to Practice, 45, 1-4.

Hart, D., Mele-McCarthy, J., Pasternack, R.H., Zimbrich, K & Parker, D.R (2004) Community college: A pathway to

success for youth with learning, cognitive, and intellectual disabilities in secondary settings Education and Training in

Developmental Disabilities, 39(1), 54-66.

Malmgren, K & Causton-Theoharis, J (2006) Boy in the bubble: Effects of paraprofessional proximity and other

pedagogical decisions on the interactions of a student with behavioral disorders Journal of Research in Childhood

Education, 20(4), 301-312.

Mosoff, J.M Greenholts, J., Hurtado, T., & Jo, J (2007) Models of inclusive postsecondary education for young adults with

developmental disabilities (1st year of 3 year research project), Vancouver, DC.

Neubert, D A., & Moon, M.S (2006) Community assessment College Park, MD: University of Maryland, Department of Special

Education Retrieved 3/18/08

Neubert, D.A., Moon, M.S., Grigal, M (2004) Activities of students with significant disabilities receiving services in

postsecondary settings Education and Training in Developmental Disabilities, 39(1), 16-25.

Schmidt, P (2005) From special education to higher education: Students with mental retardation are knocking on college

doors, and colleges are responding Chronicle of Higher Education, A36.

Strauss, A & Corbin, J (1998) Basics of qualitative research techniques and procedures for developing grounded theory,

(2nd Ed.) Newbury Park: Sage

The Association for Persons with Severe Handicaps (TASH) (2000, May) Retrieved NEED DATE from: http://tash.org/resolutions/res02advocate

Weir, C (2004) Person-centered and collaborative supports for college success Education and Training in Developmental

Disabilities, 39(1), 67-73.

Zafft, C., Hart, D., & Zimbrich, K (2004) College career connection: A study of youth with intellectual disabilities and the

impact of postsecondary education Education and Training in Developmental Disabilities, 39(1), 45-53.

About the Authors

Julie Causton-Theoharis, received her Ph.D in Special Education from the University of Wisconsin-Madison She iscurrently an Assistant Professor of Inclusive Education in the Department of Teaching and Leadership Her research focuses

on best practices in inclusive education (K-16), inclusive school reform, differentiation, collaboration, paraprofessionals andworking with students who have autism or challenging behavior She can be reached by e-mail at jcauston@syr.edu

Christine Ashby received her Ph.D in Special Education from Syracuse University Previously an inclusive elementaryspecial education teacher, she is currently an Assistant Professor of Inclusive Education in the Teaching and LeadershipDepartment of the School of Education at Syracuse University Christy’s research and teaching focuses on inclusiveeducation broadly, with specific emphasis on students with labels of autism and other developmental disabilities Her workalso includes differentiated instruction, collaborative teaching and inclusive school reform She can be reached by e-mail atceashby@syr.edu

Nicole M DeClouette received her BA degree in Psychology from the University of California at Berkeley and is currentlyworking on her Ph.D in Special Education at Syracuse University Nicole previously taught at the Jowonio School, one ofthe first inclusive preschools in the United States Her research interests include inclusive whole-school reform,postsecondary education for students with significant disabilties, and international education for students with disabilities.Nicole can be reached by e-mail at: nmdeclou@syr.edu

Postsecondary Students and Disability Stigma:

Development of the Postsecondary Student Survey of

Disability-Related Stigma (PSSDS)

Jack Trammell Randolph-Macon College

Abstract

Few instruments or studies have been designed to measure the degree of stigmatization experienced by college andUniversity students with disabilities Yet, many researchers acknowledge through qualitative studies and other forms ofexperiential data that postsecondary students with disabilities do in fact encounter significant stigma effects This studyfocused on the development, testing, and preparation for wider use of a Likert-type survey to measure self-reported degrees

of stigmatization in college students with self-disclosed disabilities The development of the Postsecondary Student Survey

of Disability-Related Stigma (PSSDS) is part of a growing post-ADA effort to reduce stigma and make postsecondaryeducation more accessible for students with disabilities

Few issues in higher education have been more challenging and groundbreaking than the increasing application to andattendance of college by students with physical and psychological disabilities Students with disabilities are attending twoyear and four year postsecondary institutions in record numbers On the positive side, this is part of a larger trend in highereducation that is moving in the direction of true universal access (Rose, Harbour, Johnson, Daley, & Abarbanell, 2006).However, as students with disabilities break through initial access barriers, they often discover that a complex layer of socialbarriers still remain beneath the surface, potentially interfering with their success In simpler terms, it’s not enough to simplyget students with disabilities to college; it is tantamount to address the problems they face once they are actually there(Janiga & Costenbader, 2002; Trammell, 2005; Venezia, 2003)

Arguably, the most significant barrier to ongoing success and access for college students with disabilities remains alatent disability stigma Stigma, for the purposes of this study, is defined as the social, academic, and psychologicalconsequences of disclosing a disability, in this case formally to the disability support office Students who self-disclose inorder to receive accommodations for their disability place themselves at greater risk on a number of levels, possibly beingsubjected to: negative stereotypes associated with disability, inaccurate assessments of their ability to complete college levelwork, inappropriate judgments by peers, lack of accommodations outside of the classroom, or even increased likelihood ofself-doubt and academic anxiety Unfortunately, from a research standpoint the qualification and quantification of suchstigma effects is notably difficult (Davis, 2006; Hartmann, 2003; Trammell, 2006; Wahl & NetLibrary Inc., 1999)

Coupled with the research challenges of studying perceived stigma is the difficulty of semantics The labels used todefine learning or learning-related disabilities—dyslexia, attention deficit disorder/attention deficit hyperactivity disorder(ADD/ADHD), bi-polar disorder—are modern inventions (though the disorders have been present for centuries) that result ininherently unstable identities (Davis, 2002) Young individuals with dyslexia, for example, have barely had to time tounderstand what dyslexia is, let alone what it means in a larger sense to be an individual with dyslexia Few college disabilitysupport personnel would suggest that students with disabilities presently come to college equipped with a sophisticateddisability identity, or have developed proficient adult skills in managing that identity (Perry & Franklin, 2006; Peters, 2006;Weyandt & DuPaul, 2006).

In the current postsecondary environment, more students with disabilities are attending college even as outdated andpersistent barriers relating to disability stigma remain in place (Eudaly, 2002; Trammell, 2002a) The degree to whichcollege students experience disability stigma firsthand has not been examined with the rigor that the demographic shiftsmight suggest would be helpful Adequate attention has not been paid to disability (particularly in 18 to 22 year olds) as astigmatizing identity in the postsecondary environment, especially in comparison to gender, race, and cultural studies.Disability in the postsecondary environment has essentially been neglected (Davis, 2002) This is in contrast to the P-12research conducted over the last 30 years or more in the public schools relating to disability, which has resulted in a highlyevolved etiology of special education and normalization (Bakker & Bosman, 2003; S Field, Sarver, & Shaw, 2003; Wong &Donahue, 2002)

College students are rightly expected to be more independent and adept at self-monitoring than younger students.Assuming that they are equipped to handle complex social exchanges involving disability is at best erroneous and at worstdiscriminatory Dating back to sociologist Erving Goffman’s research on stigma in the 1960s, there is now a growing trail ofevidence that suggests that disability becomes more difficult, rather than less difficult, to process as adults Children at leasthave the small advantage of naivety; adults, on the other hand, generally have a better grasp of the group norms and rules,and are therefore more sensitive to their violation College students, as adults, are quite vulnerable to real and/or perceivedstigmatization when those violations occur (Canu & Carlson, 2004; Crocker & Quinn, 2000; Goffman, 1963; Levin & Laar,2006; Olney, Brockelman, Kennedy, & Newsome, 2004; Price, Gerber, Mulligan, & Williams, 2005)

The degree of stigmatization, and the aspects of the college experience it most likely impacts, is suggested but far fromquantified by past research There is evidence, for example, that college students with disabilities may be hesitant to disclose tothe college or University that they have a disability, in part because of the anticipated negative consequences of that action; thatcollege students with disabilities may worry that accommodations will give them an unfair advantage, or that it will appear toothers that they are not competitive; and on the positive side, studies suggest that students with disabilities have a genuinemotivation to become more independent as learners after high school, and see the college transition experience as anopportunity to create a new, more autonomous, student identity (Janiga & Costenbader, 2002; Olney & Brockelman, 2005;Price et al., 2005; Trammell, 2000, 2003b; Trammell & Hathaway, 2007)

These anxieties can be compounded by a lingering notion that students with disabilities are not retained and do notgraduate at the same rates as their peers without disabilities, in spite of the fact that some studies suggest otherwise (Belch,2004; Getzel, 2008; Gilbert, 1996; Sydow & Sandel, 1996; Vincent, 1983; Wessel, Jones, Markle, & Westfall, 2009) Lack

of disability accommodation is not tracked with the same rigor and consistency as more traditional variables for retention,such as socio-economic status, or established measures of student engagement Few instruments exist to measure quality ofcollege experience as it relates to disability This is compounded by research deficits in the areas of postsecondary disabilitystigma, postsecondary disability and academic achievement, and community attitudes about disabilities at colleges and universities(Belch, 2004; Getzel, 2008; Reaser, Prevatt, Petschre, & Proctor, 2007; Seven Parent Populations, 2006; Trammell, 2003b; Wessel

et al., 2009)

Taking into account all of these trends and situations, a timely argument can be made that the research community needsbetter ways to quantify postsecondary disability stigma To put the matter in Foucauldian terms, power relationships betweensubjects and oppressors cannot be exposed until there is an open acknowledgement or recognition that oppression is actuallyoccurring The Postsecondary Student Survey of Disability-Related Stigma (PSSDS) was born of the quest to carefully