International Encyclopedia of Rehabilitation

Severe Disabilities (Education and Individuals with Severe Disabilities: Promising Practices)

June E. Downing, Ph.D.
Professor Emeritus California State University, Northridge

Stephanie MacFarland, Ph.D.
University of Arizona

The vital importance of education cannot be overestimated for any individual. Education is certainly critical for those individuals with severe disabilities, who often were excluded from the educational process, from a presumed inability to learn. Individuals with severe disabilities of all ages typically need more time and more opportunities to acquire and practice skills. Unfortunately, low expectations for progress, especially with regard to academic skills, have reduced the amount of exposure to typical and valued educational experiences.

For the purpose of this paper, individuals considered to have severe disabilities include those with moderate to profound levels of intellectual impairment, severe difficulties communicating their needs to others, and could have concomitant disabilities such as physical, behavioral, sensory, and health. Traditionally, these individuals were separated from those without disabilities and placed in institutions. In schools today, the majority of students with severe disabilities spend most of their school day in specialized education classrooms (Cho 2008, Peetsma et al. 2001; Williamson et al. 2006). Such specialized classrooms allow for little if any interaction with others who do not have disabilities. Also, these classrooms do not reflect typical learning environments where it is hoped students will ultimately be expected to function. Since expectations for learning have been lower in special education rooms than in regular education rooms for those without disabilities (Stainback and Stainback 1996), practice of such isolated and specialized environments for this population is in question.

The Fallacy of Perceived Incompetence

Individuals with severe disabilities were once thought incapable of learning, labeled as custodial, and placed in programs designed to provide only basic care and safety (Blatt 1981; Orelove, 1991). In environments where no teaching occurred, limited learning resulted. As a result of considerable parent dissatisfaction and activism, legislation emerged in some countries that reflected increased rights of individuals with severe disabilities (Blatt 1981). Since then research studies have confirmed the learning ability of individuals, given the opportunity to learn and quality instruction. Not only do individuals with severe disabilities learn as a result of direct instruction (Browder et al. 2006; Browder, Spooner et al. 2008), but they also learn through observation of fellow learners without disabilities (Falkenstine et al. 2009; Farmer et al. 1991).

While past perceptions questioned the ability of those with severe disabilities to learn (Blatt 1981; Ferguson 2008), current perspectives support the notion that all individuals can and do learn (Downing 2008; Jorgensen et al. 2007; Westling and Fox, 2009). How they learn may vary somewhat from others who do not have disabilities, but the acquisition of skills in a variety of venues is well documented. Students with severe disabilities have learned to eat independently, do their laundry, and dress themselves (Collins et al. 1991; Hughes et al. 1993; Taylor et al. 2002); they have increased their communication skills (Brady and Bashinski, 2008; Keen et al. 2001), improved their social skills (Ketterer et al. 2007; Shukla et al. 1999) and safety skills (Mechling 2008). Acquired academic skills have included reading, writing, and mathematics (Browder et al. 2009; Browder, Mims et al. 2008; Browder, Spooner et al. 2008; Jimenez et al. 2008).. Clearly, individuals with severe disabilities learn both academic and nonacademic skills when they are expected to learn and given quality instruction and support.

The Need for Highly Trained Teachers

To ensure that students with severe disabilities reach their full potential and receive the instruction they deserve, highly qualified teachers are needed. This is mandated in the United States under the Individuals with Disabilities Education Improvement Act (2004). Teachers require training in a number of practices proven to have a positive impact on the educational attainment of students with severe disabilities. Such recommended practices include: receiving an education in general education classrooms with clear access to the core curriculum (Downing, 2008; Fisher and Meyer 2002; Kennedy and Horn 2004), positive behavior support (O'Neill 2004), communication skills development (Beukelman and Mirenda 2005), systematic instruction (Bradford et al. 2006; Tekin-Iftar 2008), meaningful, age-appropriate programming (Snell and Brown 2006; Westling and Fox 2009), active family involvement (Blue-Banning et al 2004; Turnbull et al. 2006), and collaborative teaming (Snell and Janney 2005). Teachers need to develop specific skills and knowledge for each of these recommended practices in order to implement them in various school settings. The lack of highly qualified and trained teachers can only have a negative impact on the potential achievements of students with severe disabilities.

A New Way of Thinking

The field of special education has moved from a perspective of caretaking and protecting to an expectation of learning and growth. The question is not whether students can learn, but how much they can learn, and with what types of instruction and support. While early intervention is a recommended practice, learning can occur at any age. Those supporting the student need to know how to provide appropriate and effective instruction as well as how to challenge the student to attain higher goals. Changes regarding the education of students with severe disabilities involve maintaining high expectations for learning, inclusive education, and assuming more active roles in their communities upon leaving the educational system.

High Expectations

A major change in the educational attitude toward students with severe disabilities is the increased emphasis on learning academic skills within general education classrooms. Increasingly, these students are expected to access the same curriculum as their peers without disabilities and to make progress in this academic curriculum (Browder and Spooner 2006; Wehmeyer 2006). Under this approach to curriculum, developmental or mental age scores obtained via standardized assessments are not used as determinants of what students can achieve. Instead the student's chronological age is considered as well as culture, religion, geographic area, interests, and needs related to individual goals. Providing the necessary types and amount of support can greatly enhance the student's ability to learn and achieve. Therefore, emphasis is placed not on any perceived limitations of the individual, but on external supports that can lead to maximal achievement (e.g., the use of switches, switch interfaces with computers, and graphic software that scans to allow access to an individual unable to read or make use of his hands and arms).

Concomitant with higher expectations for learning is the relatively recent emphasis on teaching self-determination skills (Turnbull and Turnbull 2001; Wehmeyer et al. 2004). Instead of viewing students with severe disabilities as recipients of the decisions made by others, teaching these individuals the skills they need to make decisions for themselves is a growing trend. Self-determination skills can include simple choice-making, as well as more advanced skills, such as decision-making, problem-solving, goal setting, self-monitoring, and self-evaluation. When students can learn to advocate for themselves, the dependence on others is reduced.

Inclusive Education

Another change in thinking involves the issue of where students with severe disabilities should receive their education. Instead of being separated from their same age peers based on standardized test scores or developmental levels, students with severe disabilities have been shown to benefit from learning with their peers in general education classrooms. In a comparative study of general and special education placement in the Netherlands, Peetsma et al. (2001) found that after a two and four year period, students with disabilities had made more progress in language and mathematics in general education than their counterparts in special education. Another comparative study by Foreman et al. (2004) demonstrated that students with profound disabilities in Australian schools had more communication interactions in inclusive settings than their counterparts in segregated classrooms. In the United States Fisher and Meyer (2002) demonstrated the benefits of inclusive versus segregated educational placements for students with severe and multiple disabilities in communication, developmental and social skills over a two-year period.

Benefits for students without disabilities have included greater empathy, acceptance, skill acquisition, and problem solving (Copeland et al. 2004; Peck et al. 2004). In addition, support personnel (e.g., occupational therapists, speech-language pathologists) available to those with severe disabilities also are available to help students without disabilities, thus increasing the amount of instructional time with an adult. Several studies also have shown that educating students with severe disabilities with students without disabilities does not have a negative impact on the academic learning of students without disabilities, and can, in fact, enhance it (Hunt, Staub, Alwell, and Goetz 1994; Jameson et al. 2008). Bringing students together rather than keeping them apart has shown considerable merit.

Greater Community Involvement

A valued goal of education for all students is that they become productive citizens who support and contribute to the well-being of their community. Students with severe disabilities can leave the school system and assume meaningful roles in their communities provided that they are given needed support and encouraged to partially participate in activities (Wehman 2006). Educating students with severe disabilities in the natural environments of their neighborhood and community supports their ability to assume more typical adult roles upon graduation (Agran et al. 1999). Through supervised employment, volunteer work and/or service learning, students with severe disabilities can develop valuable skills for adult life while giving back to their community. For example, service learning can be any position that contributes some free service to the community, preparing meals for the homeless, caring for animals at a veterinary hospital, doing paper work for charitable organizations, caring for the elderly, or picking up litter. This type of instruction can be highly individualized and provides opportunities to practice real-life skills and develop lasting relationships in the community. As a result, it may support students with severe disabilities assuming more active and valued roles in their communities following public education. An additional benefit, is that these types of community-based learning opportunities can be done with peers who do not have disabilities, thus creating more inclusive learning opportunities during the school years (Dymond et al. 2007).

Recommended Practice for Teaching Students with Severe Disabilities

Supporting the changes mentioned above are recommended practices in the teaching of students with severe disabilities. These recommended practices include: systematic and direct instruction within natural learning environments; individualized, meaningful and culturally responsive learning; active family involvement; collaborative teaming; and positive behavior support.

Systematic Instruction

When teaching individuals with severe disabilities, the use of systematic and direct instruction has been highly recommended (Downing 2008; Snell and Brown 2006; Westling and Fox 2009). A systematic instructional approach consists of a well laid out plan of teaching that involves targeting and evaluating what students can learn given meaningful opportunities to practice their skills. Such instruction involves specific procedures for identifying, prompting and reinforcing targeted behaviors, within typical age-appropriate environments. A founding principle of systematic instruction is that educators base their teaching upon their students' individual learning styles. Therefore, the types of prompts and reinforcers used during systematic and direct instruction can be visual, verbal, or tactile, and reflect individual strengths, needs and preferences.

Systematic instruction stems from both formative and summative forms of assessment that effectively assesses student progress within natural environments and meaningful contexts. Assessment data is used both to measure student progress and to provide teachers with important information used to modify and change instructional programs. Systematic instruction is used to teach both academic skills and nonacademic skills (e.g., communication, self-care, self-determination), and can occur in typical classrooms at schools as well as in the community.

Individualized, Age Appropriate and Culturally Responsive Learning

Recognizing the needs and strengths of students leads to individualized instruction that is chronologically-age appropriate, culturally responsive and meaningful for the student. Researchers have stressed the importance of considering student interests as well as cultural implications when teaching various concepts (Edeh 2006; Richards et al. 2007). In keeping with the trend to educate students with and without disabilities together, making the core educational curriculum that is taught to all students relevant and meaningful to students with severe disabilities has become of utmost importance (Downing 2008; Kennedy and Horn 2004). Big ideas (vocabulary and concepts) are identified within each lesson and adapted materials are used to make learning relevant to the student's situation. Adaptations are individualized to allow for the student's optimal participation in learning within chronologically age-appropriate lessons. Students have access to the academic content of their same age peers, but at a level that reflects their needs and in a manner that is culturally sensitive and relevant.

Active Family Involvement

Given the importance of meeting individual needs that reflect cultural differences, religion, experiences, and language, active family involvement to assist with assessments and determining instructional programs for a particular student is a recommended practice (Downing 2008; Turnbull et al. 2006). When students are unable to speak for themselves, which is often the case for students with severe disabilities, information from family members regarding expectations at home, skills and interests of the student, concerns, and future goals serves to guide educational programs. The home-school relationship is vital, and specific approaches have been developed to facilitate this bridge, such as these seminal approaches: Person Direct Support (O'Brien et al. 2005), and Choosing Outcomes and Accommodations for Children (Giangreco et al. 1998). These approaches to obtaining information from families are designed to keep the individual student as the focal point, with those closest to the student using their in-depth knowledge and caring for the person to guide their comments and hopes for the future.

Collaborative Teaming

This teaming approach prioritizes the collaboration between the families of individuals with severe disabilities and educators to better develop and implement intervention and support strategies (Janey and Snell 2008). Collaboration among team members includes shared assessments and development of instructional programs, co-teaching in age-appropriate classrooms by special and general educators, use of natural peer supports, and use of related service providers, such as speech-language therapists, who provide support within natural learning environments. Instead of adult members of the team providing services on a one-to-one basis in a specialized environment, these service providers incorporate their expertise into the existing program (Snell and Janney 2005). Members of the team pool their resources and knowledge to support the overall learning goals of the student, rather than isolated skills representative of one discipline.

Positive Behavior Support

Positive behavior support (PBS) is a recommended practice in the field of severe disabilities for learners with challenging behaviors (O'Neill 2004; O'Neill et al. 1997). PBS is a proactive approach that takes into consideration identifying problem behaviors early and integrates many of the procedural guidelines that drive systematic instruction, such as access to meaningful routines and activities, teaching meaningful adaptive skills with an emphasis on communication skills, and functional assessment. The challenging behavior is perceived as a student's way of self-expression to meet unique needs and desires, not as "bad" behaviors that need to be punished and extinguished. Positive and proactive means of supporting the student are used to remove the need for the student to engage in the undesired behavior, and alternative skills are taught (usually communication skills) to encourage self-expression in a more acceptable and conventional means. The focus of PBS is on determining the function of the challenging behavior for the student, and helping the student to engage in other behavior that assumes that same function.

The Future: Postsecondary Options

Perceptions regarding future options for students with severe disabilities also have changed. Typical lives have been sought for these individuals in work environments, residential sites (e.g., owning one's home, sharing an apartment), recreational venues, and general access to their community. Given the foundation of "A New Way of Thinking" and implementing the recommended practices previously explained, individuals with severe disabilities can have more typical lives in their communities. In the later school years, all students are preparing to transition to their adult life, whether they plan to go to college or directly go into the work force. Since generalization of skills is often difficult for students with severe intellectual disabilities to acquire, teaching these students where the skills need to be demonstrated can facilitate the acquisition of meaningful adult skills (Westling and Fox 2009). Learning in the actual community, or community-based instruction is an individualized student-centered approach that may be one very meaningful part of a student's overall program and supports the student's acquisition of academic, vocational, recreational, and domestic skills in meaningful and natural environments. This particular instructional approach supports life-long learning across all venues of living.

Furthering educational growth also has been considered as part of postsecondary options. High school graduates with severe disabilities should have similar options to students without disabilities. Benefits from inclusion in colleges and university programs have been reported for students with moderate and severe disabilities (Carroll et al. 2008; Hart et al. 2004). As with younger students with severe disabilities in school programs, instructional and curricular content in colleges and universities will need to be adapted to meet the unique instructional needs of each student. With the appropriate supports and expectations, students with severe disabilities should be able to continue to learn from their participation in typical classes with their nondisabled peers. In other words, learning should not stop following the completion of required years in school.

Summary

This paper has presented issues around the education of students with severe disabilities. Changing perspectives regarding expectations of these learners and optimal environments for education and instructional practices have been discussed. Students with severe disabilities can and do learn both academic and nonacademic skills. They need instruction by highly qualified teachers who can recognize their abilities and can maintain high expectations for their development and growth. Recommended practice for this population of students includes learning with peers without disabilities, systematic instruction that takes into account their chronological age, culture, interests and needs, strong family involvement, collaborative teamwork for a unified approach, and positive behavior support that keeps the focus on desired behavior.

Barriers to the learning of students with severe intellectual disabilities can include low expectations, teachers who lack training, limited if any family involvement, programming based on developmental models of learning, and environments that are highly specialized and not reflective of typical settings. Recognizing these barriers for what they are and making a commitment to ensure that they do not hinder student development are important goals for the field of the education of students with severe disabilities to achieve.

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Downing JE, MacFarland S. 2010. Severe Disabilities (Education and Individuals with Severe Disabilities: Promising Practices). In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/114/

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