We Have Come So Far,Yet We Have a Ways to Go: Commentary on Agran et al. (2018)

Research on Voting Rights and Opportunities

The extant research on the rights of citizens with severe disabilities to vote in a democratic society indicates that the process of providing voting opportunities, information, and training to these individuals has been seriously neglected by advocacy and service organizations, and is even impeded by many state laws (Agran, Andren-Kitchen, & MacLean, 2016). What we now know about our failure to provide these individuals with opportunities to participate in the making of law via the vote is the direct result of this evolving and important line of research. As noted in the section on voting, it will require a combination of community commitment to what is largely a civil rights issue, plus research engagement, to show us how to build and support voting opportunities and to assess our progress.

Examined from a civic responsibility perspective, voting does not occur in a vacuum: There are issues and concerns that motivate citizens to vote and, furthermore, to prompt debate and/or political action to encourage others to see things as they do. “Voting” is really part of a larger ecology, involving the flow of political information, the consideration of different viewpoints, and the expression of perceptions of what is “right” and “wrong.” It is this larger ecology that provides an impetus for what can be described as “voting behavior.” This suggests that an important research issue is how do we bring the people whom we serve into the discourse of politics as part of community and social life. Within this perspective, voting begins with knowing about and keeping up with current events, and voting is treated as an expected responsibility of the citizen by family members and service providers. When voting becomes an expectation, even a presumption, and when a person is immersed in the dialogue of politics across the life span, then we might predict that voting behavior could more reliably occur and be maintained, because of its value to the citizen, and his or her perception of its value to others.

The foregoing argument suggests that civic responsibilities such as voting really begin not in adulthood but with immersion in the essentially political community of the school. In schools, it is introduced and nurtured by ongoing dialogues of mixed opinions and attitudes, provided both in classes about governance and history and in hallway and schoolyard discussions on current events. When students with severe disabilities are served in self-contained settings and taught with “functional curriculum,” the implications are clear: missed opportunities for immersion and participation in school-based discourse on governance, current issues, and civic responsibility. A possible result of prolonged exclusion from this discourse is that these students leave school lacking the fundamental attitudes, skills, and interests needed for participating in the expected political activities of a democratic society.

Research on Supported Employment

In terms of civic responsibility, employment is a major way that we contribute to our society and to those around us. In this respect, work is not just about doing a job but also about participating in a larger milieu of our culture; that is, the world of work. In my opinion, one of the most important messages of the research on supported employment reported in Agran et al. (2018) is that the people we serve can, as adults, be immersed in the larger world of work; that not only can they have “jobs” but they can also be integrated into the lives and activities of others (e.g., Butterworth, Hagner, Helm, & Whelley, 2000).

For supported employment to become increasingly visible and (eventually) the dominant practice over center-based (sheltered) employment practices, the field could benefit from an expanded base of research on instructional and support processes that contribute to the success of “customized” employment (Office of Disability Employment Policy, 2005). These include (a) the use of school-based evidence-based practices in transition services (Gilson, Carter, & Biggs, 2017); (b) the provision of competitive, supported employment opportunities to students in transition programs; (c) specialized promotional and instructional processes for ensuring and maintaining market-driven employment (Unger, 2007); (d) practices for negotiating with potential employers the contribution and support needs of the adult worker with severe disabilities (Butterworth et al., 2000; Phillips et al., 2009); (e) ways to configure coworker involvement (Butterworth et al., 2000; Cimera, 2007; Mank, Cioffi, & Yovanoff, 1999); and (f) the creation of job accommodations, including work material adaptations (Butterworth et al., 2000; Hartnett, Stuart, Thurman, Loy, & Batiste, 2011). We also need, as strongly asserted by Agran et al. (2018), the elimination of adult activity centers and segregated vocational programs that literally base their existence on a view that a place must be provided for those who cannot contribute to the world of competitive and business-driven employment.

There are two additional issues that must be considered in research on preparing students with severe disabilities for adulthood and employment. These two issues relate to how high school students are to be educated for adulthood, whether in general education classes or in disability-oriented vocational settings and self-contained classrooms. These two issues are contentious because people in our field hold divergent perspectives on what is “best” for these students. First, there is the issue of when to introduce specialized transition services, versus maintaining inclusive placements. On one hand, there is an emerging body of research suggesting that time and experiences in general education may contribute to certain positive skill outcomes, for example, self-determination skills (Hughes, Cosgriff, Agran, & Washington, 2013; Wehmeyer et al., 2011). This research suggests that inclusive placements should not be discontinued in high school based on a view that the needs of these students have diverged from those of everybody else. Inversely, some in our field have argued that academic inclusion during high school is contraindicated for preparing these students for entering the workforce (Phillips et al., 2009). Clearly, research is needed examining whether it is necessary and beneficial to “customize” the educational experiences of students with severe disabilities before the transition period (typically considered to be ages 18-21), such that they are not attending the classes of peers but are instead receiving community living and/or job training skills. And, because self-contained classrooms are often used for these purposes, research should examine to what extent these classes actually meet the “individualized transition needs” of the older student soon to face adult life. My experiences in secondary settings indicate that this dichotomy between providing specialized programs intended to contribute to adult life preparedness versus educating students in classes with typical peers is often the “elephant in the room”; that is, these contrary, sometimes undisclosed agendas tend to work against each other in Individualized Education Program (IEP) meetings for older students.

The second and final issue relates to the question, “To what extent does removal of these students from mainstream classes for specialized vocational and community living services result in negative perceptions of them by their typical peers, their soon-to-be fellow citizens in adult society?” Noting what we know about how students in mainstream classes perceive those who have been or are being removed (Fisher, 1999; Schnorr, 1990), one wonders how the separation of these students from the mainstream affects the future interactions of these two populations, especially in relation to their being together or separated in the adult world of work.

The latter issue goes beyond “instructional practice” and into conceptualizations of “culture,” that is, the “lens through which we view, interpret, and find meaning in the world in which we live” (Wehmeyer et al., 2011, p. 23), and which often unconsciously affects how we view disability (Wehmeyer et al., 2011). Wang and Lam (2017) proposed that culture is the missing piece in the evidence-based practice movement. In my opinion, in the preparation of students with severe disabilities for adulthood and the world of work, there is the troubling possibility that “culture,” rather than “evidence,” is playing the dominant role in the practice of removing these high school students from the mainstream for specialized, educational experiences. It is then this same culture, having played itself out in high school placement practices, that reinforces a social separation of these individuals in the world of work during adulthood.

Research on Family Support

The shift in emphasis on family support—from a focus on negative family outcomes to examining more closely how families adapt to and embrace disability—reflects a significant change in how families can be examined in family support research. It is increasingly recognized that families of children with extensive support needs can be cohesive and nurturing units, and that these parents can perceive their children with disabilities as positive contributors to the family’s overall quality of life. From the standpoint of civic responsibility, the latter statement is of special prominence. It marks a possible shift away from viewing children with disabilities as “burdens” that are thrust upon families to one in which these children are perceived as significant as any other child to the emotional health and joy expressed in the family unit.

This is not to say that families do not have support needs. Agran et al.’s (2018) discussion of family support notes a continuing need for community supports, such as behavior support services. Yet, the change in perception does suggest that research in our field can explore family support services from a different perspective. Imagine viewing families of children with severe disabilities as potentially healthy units, to be reinforced rather than remediated, and which can potentially serve as role models for other families with and without children with disabilities, exemplifying what a cohesive, loving, and well-adapted family looks like.

Research on Severe Challenging Behavior

Arguably, applied behavior analysis research of the 1960s (e.g., Baer, Wolf, & Risley, 1968) set the stage for the assessment and intervention practices of positive behavior support. Noting especially the work of Carr and colleagues (Carr, 1977; Carr & McDowell, 1980) and the work of Horner and colleagues (1990), contemporary challenging behavior research in the field of severe disabilities has advanced our understanding of how environmental variables control behavior, and how these can be manipulated to yield positive change for the child who significantly challenges others.

Nevertheless, as noted by Agran et al. (2018), our field still lacks understanding of how evidence-based practices emerging from this research can be used with students with the most severe challenges. Another concern these authors describe is that this research continues to occur mostly in segregated settings, which can only impede our efforts to include all students in general education. Certainly, persons with severe challenging behaviors present situations that can be dangerous for others. Yet, if these individuals are to become part of our community, we need research showing what can be accomplished without separating them for prolonged periods of time from typical peers. This may require that we accomplish more research in the context of ordinary settings, whether it be in schools, homes, or the community.

Through the lens of civic responsibility, perhaps we should also consider reframing how we think about these individuals, and consider the implications of this for our ongoing research activities. Even though the field is aware of how an environment controls behavior, our language still suggests a tendency to place the onus of control back on characteristics of the child. Instead of viewing the child as necessarily the problem, we should begin looking more frequently at challenging behavior as conflict, occurring in sometimes complex patterns between a person and others in particular settings and activities; when viewed in this way, “others” may be part of the problem. This shifts our understanding of the solution from being primarily about strategies of antecedent and consequence manipulation to processes and activities of conflict resolution between all involved. This can lead to considering major changes in the behavior of adults, with a focus on building mutual trust and enhanced self-worth in the identified person and significant adults. Consistent with this idea, Turnbull and Turnbull (2011) have described how reciprocal relationships should be part of what is experienced by the person with challenging behaviors, so that they can have a “dignified lifestyle” (p. 74).

This perspective also encourages us to consider whether children and youth who have challenging behaviors and who are extensively segregated may in some cases be reacting to the conditions of segregation. One can, for example, raise concerns about the impact on learning and behavior when students are placed in the same program for repeated years, as happens when all students of multiple ages and grades are placed together in the same self-contained classroom for the duration of their stay in a particular school. Emotional states that need to be considered in such research include social isolation, helplessness, low self-esteem, and boredom.

The views expressed above do not negate the possibility of real emotional issues in some proportion of these students, especially in relation to traumatizing events in their lives (Dutro & Bien, 2014; Oseroff, Oseroff, Westling, & Gessner, 1999); nevertheless, they do suggest that we need to consider ways of addressing the behavioral aftereffects of trauma without necessarily segregating these students for instruction and treatment.

The foregoing views also do not negate the possibility that persistent student problems can reflect training needs in teachers. As an example of the latter, Blood and Neel (2007) found that, even when functional behavioral assessments are conducted by teachers, they may not actually be used when developing behavior plans. This may be a training need. However, interpersonal and relationship issues could still be factors when instructional practices are less than ideal. For example, there is evidence that the classroom dynamics experienced by students viewed as typical versus those perceived as at risk for emotional concerns can be different, with the latter experiencing rejection by teachers, being viewed as less ideal than others, and receiving more “negative or neutral, and nonacademic teacher feedback” (Lago-Delello, 1998, p. 487) than peers. It is important to recognize that the perceptions of students with behavior challenges about their situations are not always distorted; they can be real and acute understandings of how they are being treated by the systems and people that serve them. This challenges researchers to think differently about these behaviors, if we are truly invested in helping school systems help these students become responsible citizens.

Research on Academic Instruction

From a civic responsibility perspective, academics are not just fields of knowledge learned, then abandoned, once one reaches adulthood. They are the substance of our culture, whether directly serviceable, as in math for grocery shopping, or providing a shared identity, as in history or literature. With this in mind, the Agran et al. (2018) section on academics indicates that we have much to celebrate. As discussed by these authors, advances have occurred in both our beliefs about what should be taught and in extensions of evidence-based instructional methods to the task of teaching these skills. A takeaway from this section is that students once believed to need only daily living skills can and should be taught what other students their age are learning.

With academic instruction, we are faced with the same dilemma that we face with vocational and adult life instruction in high school: culture, not evidence, may be the significant determinant of the context of school-based programs. Put differently, one might think that general education classes with supports would now be where students with severe disabilities are taught what others are learning. Yet, self-contained classes continue to be used for academic instruction not because they have a solid research base but because that is what has always been done. Regrettably, my experience in schools continues to reaffirm what the research tells us (e.g., Kurth, Born, & Love, 2016), that the dynamics of these classrooms make it doubtful that they can effectively deliver general education content, especially at grade level (Soukup, Wehmeyer, Bashinski, & Bovaird, 2007).

Research on Inclusive Practices

Understanding what inclusion is requires knowing what it is not—it is not a self-contained classroom plus integration opportunities, even when these opportunities include mainstreaming into academic classes. Many teachers who I work with do the latter, ensuring that some or all their students “go out” for certain academic classes (e.g., science, social studies, health). These teachers are to be commended for their successes, which often occur against a backdrop of pressure to segregate these students more, rather than less. Yet, mixed placements still deprive students from the possibility of acquiring that which constitutes the knowledge base of the educated adult in our society (Jackson, Ryndak, & Wehmeyer, 2008). Inclusive education, defined as educating students with special education needs in general education all or most of the time with the supports they need to learn (Ryndak, Jackson, & Billingsley, 2000), does not assure the acquisition of any particular knowledge base or skill set, but it offers a path toward that possibility. Hence, in terms of civic responsibility, continuous inclusive placement during the K-12 period provides the optimal base for students to potentially acquire the knowledge and skills perceived by a community as important for subsequent membership in adult society.

Agran et al. (2018) report that students with severe disabilities remain less likely to be placed in general education than students with other disabilities. In light of this, it is troubling to think that nearly 40 years ago, we were identifying problems with how time and instructional tasks are managed within self-contained classrooms for this population (e.g., McCormick, Cooper, & Goldman, 1979). We thought that we could fix these concerns through teacher training (McCormick et al.). The likely reality, however, is that the setting itself is the source for many instructional and management problems (Jackson et al., 2008). Accordingly, these problems cannot be fixed by teacher training, or for that matter, applying any solution that simply attempts to augment the expertise or resources provided to the setting.

In terms of real progress, Agran et al. (2018) provide evidence that research continues to demonstrate that students with severe disabilities experience academic growth, social engagement, and positive behavioral outcomes when taught in general education. As made clear by Agran et al. (2018), these students may need support to assure learning; the authors delineate practices that enhance inclusion, such as embedded instruction and the application of universal design principles. I would add that we need more research that addresses how to infuse special education practices into the instructional activities already provided by the general education teacher (Copeland, Hughes, Agran, Wehmeyer, & Fowler, 2002). Jackson, Ryndak, and Billingsley (2000) called for this kind of research more than 15 years ago, and some practitioner articles also draw attention to this research need. Downing and Eichinger (2003), for example, make a distinction between what is occurring already in the classroom and what instruction and supports should be added to enhance inclusion.

An approach to this issue is suggested in a recent article in the reading research literature, examining an evidence-based summer literary program across 27 high-poverty elementary schools (Kim et al., 2017). One group of learners received instruction strictly adhering to the recommended curriculum implementation procedures, emphasizing replication and fidelity in the use of the evidence-based procedures. A second group of learners received instruction in which the evidence-based procedures were adapted by the teachers, who considered their knowledge of the students and other factors to “extend, modify, or create new program components” (p. 451). As measured by changes in reading comprehension, the results favored the students served in the adaptations condition. The results also showed that, even with on-site adaptations, implementation fidelity was realized for the primary evidence-based components of the program.

Special educators face a parallel situation when serving students in inclusive placements: Certain general education practices are viewed as required, recommended, or underwritten by research evidence, and their use is to be anticipated in typical classrooms. However, we may need to modify these to enhance their effectiveness for students with severe disabilities. Presently, we lack research-based guidance on how to make changes to assure instructional effectiveness without compromising the integrity of the original practices. To support inclusion, we need to expand our knowledge about typical and recommended practices in general education (e.g., Fisher & Frey, 2013), then conduct research on how to adapt these for our learners.

Conclusion

Agran et al. (2018) demonstrate that our field has grown in its instructional capacity as a result of ongoing research with participants who have severe disabilities in home, school, and community settings. Certainly, a purpose of this commentary has been to assert that what has been accomplished in this research is truly significant; however, in each of the six arenas addressed in this article, I have suggested areas in need of deeper inquiry. In many ways, the common thread is context, whether this be in terms of educational placement, the cultural milieu, interpersonal and family relationships, or the ecological setting.

What is required is more research conducted in inclusive and natural contexts, whether these be family, community, work, or general education settings. Likening it to the process of acquiring language (Hart & Risley, 1995), students with severe disabilities can benefit from prolonged, longitudinal exposure (a) to the classroom and curriculum of general education, with its high expectations, task demands, and immersive experiences with typical peers and adult authorities; (b) to family life routines filled with typical activities and relationships; (c) to fully integrated employment opportunities with their steady and ongoing interpersonal and work demands; and (d) to community life with its norms of conduct and expected civic responsibilities. It will be in the marriage of the evidence-based practices research of today with an expanded arena of inclusive places that we will find the final and most significant frontier for our research, and the one most likely to have the greatest lasting value.