1. Toward Improving Self-Determination in Students With Invisible Disabilities Participating in Higher Education, a First Step
by
Joseph D. Bryant
Overview
This paper provides some background regarding the researcher’s “Practitioner Concerns” that will be discussed at the conference and outlines aspects of his study that seeks to verify whether successful students with invisible disabilities participating in higher education have levels of self-determination that are equal to or greater than those of their non-disabled peers. Results of such a study could be used to justify spending limited resources on this important element of human development.
Introduction
Various laws have been enacted over the past decades to ensure students with disabilities have access to higher education. Since the initial passage of the Education of All Handicapped Children Act of 1975, higher education in the United States has observed unprecedented growth in some part due to the seemingly ever-growing population of students who self-identify with a disability and with an invisible disability in particular. Despite this substantial increase in the number of students with disabilities enrolling in institutions of higher education, many of these students do not complete their degrees. Nonetheless some students with disabilities, visible and otherwise, complete their degrees. With regard to why some students with invisible disabilities complete their degrees and others do not, the available but limited research suggests that there

2. are environmental and personal characteristics of these students that are responsible for success. The same research also suggests that these characteristics might be regarded by students with invisible disabilities as being more important than many of the student services that today’s colleges and universities provide. With regard to invisible disabilities, it is the position of this researcher that a student with an invisible disability’s level of self-determination may be the most crucial characteristic attributable to academic success in higher education. With that said however, there have been few studies that specifically address this assertion. As educational leaders, we are in an excellent position to test this assertion and add to this limited body of knowledge. In so doing, this researcher believes we will be better able to serve some of our most deserving students.
Practitioner Concerns
To date, there has not been extensive research aimed squarely at examining the characteristics and experiences of students participating in higher education who have invisible disabilities (Cosden & McNamara, 1997). Yet despite the lack of research about this group of disabled students, invisible disabilities are the most frequently reported disability in primary and secondary education (Aron & Loprest, 2012) and in higher education (Belch, 2011; Thoma & Getzel, 2005; Troiano, Liefeld, & Trachtenberg, 2010). Some common examples of invisible disabilities include: learning disabilities, Attention-Deficit/Hyperactivity Disorder, dyslexia, vision and/or hearing impairments, speech or language impairments, dysgraphia, bipolar disorder, autism, schizophrenia, and intellectual disability (formerly mental retardation).
It is important to note that while definitions of disabilities, including invisible disabilities, may differ among professionals, there are central elements or characteristics ascribed to them which comport with the Americans with Disabilities Act of 1990 (ADA), including changes

3. made by the ADA Amendments Act of 2008. The ADA defines an individual as having a disability, if he/she possess “a physical or mental impairment that substantially limits one or more major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment” (ADA, 1990, 42 U.S.C. § 12102[1][A-C]). The objective of this paper is not to dissect and analyze the disability related laws extant in higher education, rather the author seeks to provide a succinct and basic definition of what behaviors and/or conditions constitute a disability under the ADA for purposes of a common frame of reference throughout this paper and subsequent discussion. The reader should note that the ADA does not distinguish between invisible disabilities and any other type of disability. Furthermore, the reader is reminded that the ADA is not the only law which provides protection for individuals with disabilities who participate in higher education.
Some Background and Possible Problems
Many of the students described above have received some form of special education prior to entering higher education. Special education as defined by the Individuals with Disabilities Education Improvement Act (IDEIA, formerly IDEA and still often regarded as such) is education, provided to the child with a disability, that meets his/her specific needs, and at no cost to the parent or guardian (IDEIA, 2004). In various forms special education may be provided to a child with a disability throughout his/her primary and secondary schooling. Special education, often, but not always, involves some degree of curriculum modification and/or accommodation. A possible problem is: special education does not exist in higher education (Hadley, 2006). Accordingly, the idea of substantial curriculum modification does not exist in higher education. Indeed, institutions of higher education are governed by fewer laws relating to the provision of

4. extra assistance to individuals with disabilities than are primary and secondary schools (Hadley, 2011).
In the case of some individuals with disabilities participating in higher education, this researcher believes the fact that special education (and its often concomitant modifications and/or accommodations) does not exist in higher education often becomes a problem for such students who, under the auspices of special education, formerly received such unique education, prior to entering higher education, that they encounter substantial difficulty succeeding with only the benefit of what are termed “reasonable accommodations” as afforded by the applicable laws governing the provision of extra assistance to individuals with disabilities in higher education. Substantial analysis of reasonable accommodations per se remains somewhat outside the scope of this paper; but for purposes of the discussion suffice it to say that reasonable accommodations as applied to individuals with disabilities participating in higher education, are designed to assist with the accessibility of a student’s environment and/or curriculum. Thus, where special education sought, if necessary, to modify a student’s environment and/or curriculum, and/or provide access to the same, reasonable accommodations in higher education only address matters affecting a student’s access to his/her environment or curriculum.
This researcher believes Hadley (2011) was correct when she asserted that “the college environment for students with disabilities…does not include the same extent of support that is required in high school settings” (p. 77). Where primary and secondary schools have a legal duty to seek out and provide special services to students with disabilities (IDEIA, 2004), postsecondary schools have no such obligation; and the onus to receive any sort of extra assistance rests entirely with the student (Field, Sarver, & Shaw, 2003; Hadley, 2006, 2007, 2011; Thoma & Getzel, 2005). The change regarding the onus to acquire extra services is

5. readily evident between the two worlds of primary and secondary education and post-secondary education and as some researchers suggest is a problem for students with disabilities (Abreu- Ellis, Ellis, & Hayes, 2009; Hadley, 2006, 2007, 2011). Indeed, special education has been criticized as “work(ing) against successful outcomes in postsecondary education” (Field et al., 2003, p. 340). The reasons for such a criticism and several others are plenty, and outside the scope of this discussion; but statements such as “special education students still lag behind their nondisabled peers in educational achievements, (and special education students) are often held to lower expectations” (Aron & Loprest, 2012, p. 115) and “(special education) may foster dependence and inhibit self-advocacy skills that are necessary for the student…to be successful in a college environment” (Johnson, Zascavage, & Gerber, 2008, p. 1163) appear fairly typical.
Regardless of how and why problems exist in higher education for some students with disabilities regarding the provision of extra assistance to help manage the same, the fact of the matter is many disabilities, especially those of a hidden nature are intrinsic to the student (Hadley, 2006; Stage & Milne, 1996) and life-long. The problem therefore is a student’s disability may remain ongoing, but a method upon which a student relied upon to learn and perhaps be successful in school, special education, ceases upon entry into post-secondary education. Given this state of affairs, perhaps it should come as no surprise that higher education graduation rates and rates of employment among individuals with disabilities remain significantly below those of their otherwise non-disabled peers (Barber, 2012; Skinner, 2004). As educational leaders and practitioners, shouldn’t we do something about this? Admittedly, we have no legal duty at this time to do anything about the lower graduation rates among this population, but shouldn’t we try something?

6. In actuality, we are doing several “somethings,” but could our efforts and limited resources be more efficient and effective? To date, most institutions of higher learning provide reasonable accommodations to those students who self-identify with a disability as well as freshmen seminars, study groups, study skill sessions, peer-tutoring, various academic labs, and related services for all students. This researcher believes more can be done, beginning with a study to examine the characteristics, internal and external, of students with invisible disabilities. Among other things, the results of such a study may be used to assist institutions as they design student services and programming for all of their students.
While there have been previous studies examining characteristics of primary and secondary students with invisible disabilities, the available literature does not concern itself to a significant extent on the internal and external characteristics of students with invisible disabilities in higher education (Cosden & McNamara, 1997). Indeed there has been a small number of studies that examined characteristics of successful disabled students in higher education (Jameson, 2007; Skinner, 2004; Thoma & Getzel, 2005); but these studies have not focused exclusively on students with invisible disabilities.
The author of this paper is conducting a mixed methods study in an attempt to measure whether levels of self-determination among successful students with invisible disabilities participating in higher education are equal to or greater than levels of self-determination among their otherwise non-disabled but successful peers. Over the course of completing his literature review, the author has found several researchers who have indicated that there are many factors that are responsible for the success of students with invisible disabilities participating in higher education. Some of these factors relate to the provision of reasonable accommodations. Other factors however are far less tangible than reasonable accommodations (Abreu-Ellis et al., 2009;

7. Barber, 2012; Hadley, 2006, 2007, 2011; Johnson et al., 2008, Skinner, 2004; Thoma & Getzel, 2005). Chief among these incorporeal factors that are in part responsible for the success of students with (and without) invisible disabilities is the concept of self-determination.
Self-determination has been the subject of scholarly work for decades (Deci & Ryan, 1987; Jameson, 2007; Wehmeyer, 1995; Thoma & Getzel, 2005). Researchers have created various definitions for self-determination. While definitions among researchers vary, many definitions of self-determination center around the concepts of an individual knowingly acting as his/her own causal agent (Wehmeyer, 1995) and acting freely. After researching the concept of self-determination, Wehmeyer (1995) produced the Arc’s Self-Determination Scale to assist in the measurement of self-determination among adolescents with cognitive disabilities. This instrument was subtly modified by Jameson for use in a 2007 study that examined self- determination in students participating in higher education with disabilities. In the study, Jameson did not solely examine students with invisible disabilities. Additionally, Jameson did not focus exclusively on current students and recent graduates or directly seek to compare levels of self-determination among students with invisible disabilities against those of otherwise non- disabled peers.
This researcher’s study will build upon some earlier work, including that of Jameson (2007), by focusing exclusively on successful students with invisible disabilities and measuring their levels of self-determination and comparing those levels with otherwise non-disabled successful peers using Jameson’s adaptation of Wehmeyer’s Arc Self-Determination Scale. Permission to use this instrument has been obtained by the researcher from both Wehmeyer (1995) and Jameson (2007). This study will analyze the findings obtained by the instrument and look for additional themes suggesting levels of self-determination among the two subject groups

8. via analysis of interviews of randomly selected participants who completed the quantitative portion of the study. The researcher is actively seeking participants as well as colleagues in higher education who might assist with the recruitment of participants and be willing to act as a go between ensuring the anonymity of the participants. Thus far, data is unavailable for analysis. With that said, the researcher hypothesizes that a successful student with an invisible disability who participates in higher education will have a level of self-determination, as measured by Jameson’s (2007) modified ARC scale, equal to or greater than that of an otherwise successful non-disabled peer.
Given that there is little research in this area and this is only one study, the findings and implications are important. Perhaps most important, is the thought that information garnered from this study can be used by researchers and institutions of higher education to provide further evidence that there are certain levels of self-determination present among successful students with invisible disabilities participating in higher education; and what these levels are compared with otherwise successful but non-disabled peers. As a result of this evidence, some of the limited resources we have available to us could be ear-marked for any student who might wish to benefit from additional strategies to develop his or her level of self-determination. Additionally, information obtained from this study can be used by primary and secondary educators who work with students with disabilities to better prepare them for the realities of higher education with regard to the operation of the various laws that exist to help them manage their challenges. Conclusion
Enrollment of students with invisible disabilities in higher education continues to increase. The available research does not indicate this trend changing anytime soon. Moreover, the percentage of students with invisible disabilities who complete their degree is lower than that

9. of their nondisabled peers. It is possible that some of the difficulty that some of these students experience is the result of having only reasonable accommodations to help them manage their difficulties in higher education. Where primary and secondary schools have a legal duty to seek out and provide assistance via accommodation and modification of curriculum and/or environment, colleges and universities are not held to the same standard. The onus to obtain assistance rests entirely with the student. This researcher questions whether more can be done by institutions of higher education. This researcher believes the answer is in the affirmative; but it is important before allocating limited resources that more information is generated to help verify if capitalizing on an individual’s level of self-determination is a better way to help ensure the success of our students.
References
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Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990).
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Individuals With Disabilities Education Improvement Act of 2004, Pub. L. No. 101-476, 104 Stat. 1142 (2004).
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11. Skinner, M.E. (2004). College students with learning disabilities speak out: What it takes to be successful in postsecondary education. Journal of Postsecondary Education and Disability, 17(2), 91-104.
Stage, F.K., & Milne, N.V. (1996). Invisible scholars: Students with learning disabilities. The Journal of Higher Education (Columbus, Ohio), 67, 426-45.
Thoma, C.A., & Getzel, E.E. (2005). “Self-determination is what it's all about”: What post- secondary students with disabilities tell us are important considerations for success. Education and Training in Developmental Disabilities, 40(3), 234-242.
Troiano, P.F., Liefeld, J.A., & Trachtenberg, J.V. (2010). Academic support and college success for postsecondary students with learning disabilities. Journal of College Reading and Learning, 40(2), 35-44.
Wehmeyer, M.L. (1995). The ARC's self-determination scale. Procedural Guidelines. Arlington, TX: The ARC.
Joseph D. Bryant, EdS, JD, is a practicing school psychologist, an EdD candidate at Lindenwood University, and an adjunct criminal justice instructor at St. Louis Community College, 11333 Big Bend, Blvd., St. Louis, MO., 63122, jbryant39@stlcc.edu
Presented at the Midwest Research-to-Practice Conference in Adult and Higher Education, Lindenwood University, St. Charles, MO, September 20-21, 2013.