Severe Disabilities

by

Martin Agran, Fred Spooner

• LAST REVIEWED: 29 November 2017
• LAST MODIFIED: 29 November 2017
• DOI: 10.1093/obo/9780199756810-0098

Introduction

People with severe disabilities are considered to have the following disabilities: severe intellectual disability (formerly referred to as “mental retardation”), autism, deaf-blindness, and multiple disabilities. They present great learning, behavioral, personal, social, physical, and sensory challenges and have extensive support needs (e.g., related service providers, paraprofessionals, peer tutors). Additionally, a number of these individuals may have serious medical and health-care needs and be dependent on medical technology (e.g., mechanical ventilator, gastric feeding tube). Historically, those with severe disabilities have been some of the most devalued, persecuted, and marginalized people. Because of their learning and support needs, expectations for students and adults with severe disabilities have been low, as it was thought they had limited capacity to acquire, process, and apply information and achieve a true level of independence or competency. However, with changing attitudes in the 1970s about equity, disability rights, and social acceptance, a growing body of research literature emerged that demonstrated that individuals with severe disabilities have a much greater learning capacity than previously thought. For much of the last century, the primary curricular focus has been on teaching functional community and daily living skills. This was driven by the belief of the professional community and parents that acquisition and application of such skills would enhance the independence of individuals with severe disabilities, and, in turn, increase their social integration and acceptance. To further promote social acceptance, research was conducted in the 1980s and 1990s that examined ways to increase the social competence of individuals with severe disabilities. In the late 1990s, following changes in general educational policy and social opinion, there was growing consensus that students with severe disabilities can indeed benefit from academic instruction, and that such instruction—particularly in the areas of literacy, mathematics, and science—should be provided. Further, in the last forty years or so, there has been a shift in thinking about educational placement. Currently, there is general consensus that people with severe disabilities need to be served and participate in inclusive or integrated school and community settings (e.g., supported employment, community-based living) and not in segregated or sheltered settings as previously thought. This article presents annotated citations regarding educational, community living, and social practices that have enhanced the education, integration, and acceptance of persons with severe disabilities, and advanced the quality of educational and social services they receive. The headings represent domains or topics most relevant for this population (Note: Both recent and classic references are included).

Inclusion

As perspectives on curricula have shifted across the course of the last four decades, our thinking about educational placement also has changed. The commonly held view now is that people with severe disabilities should receive their education in inclusive or integrated school settings. Early work in the area of inclusion for students with severe disabilities was fueled by books such as Stainback and Stainback 1992 on curriculum considerations and Downing 1996 on practical strategies, which teachers could use, on a daily basis, to facilitate successful inclusion. Although there are reasons for optimism with documented demonstrations published in Janney and Snell 1997 showing how teachers include students with severe disabilities in their classes, much more progress needs to be made. The views of typical developing students are an important consideration as the process of inclusion is planned, and Schnorr 1990 provides the perceptions of one class of students as they interacted with a student who was a part-time member of their class. Giangreco, et al. 1993 discusses the transformation of teachers as they were including and counting a student with a severe disability. Hunt and Goetz 1997 reviews investigations on inclusionary practices and found six emerging themes, including the importance of parental involvement, gains made by both students with and without disabilities, and the necessity of collaboration among school personnel for successful inclusionary practice. Hughes and Carter 2008 focuses on using peer buddies as part of a successful change-agent team, and Jorgensen, et al. 2010 with the “Beyond Access” model provide additional guidance for promoting membership, participation, and learning in the general education classroom. Carter, et al. 2016 conducted a randomized controlled experiment which examined peer support arrangements to improve academic and social outcomes for students with severe disabilities in high school settings, concluding that those students in the experimental group made greater gains in interactions with peers, academic engagement, and other areas. Work documented by Horn, et al. 2000; and Odom, et al. 2011 addresses the progress of young children in inclusive settings. De Boer and Munde 2015 reviewed parental attitudes toward inclusion for children with profound intellectual and multiple disabilities in a country outside the United States, the Netherlands.

• Carter, Erik W., Jennifer Asmus, Colleen K. Moss, et al. 2016. Randomized evaluation of peer support arrangements to support the inclusion of high school students with severe disabilities. Exceptional Children 82.2: 209–233.

  DOI: 10.1177/0014402915598780

  In a randomized controlled experiment, authors examined the efficacy of peer support to improve academic and social outcomes for students with severe disabilities (n = 51 experimental group; n = 48 control group). Students participating in the experimental group—namely, those receiving peer support—increased interactions with peers, increased academic engagement, made more progress on individualized social goals, increased social participation, and made a greater number of new friendships.

• de Boer, Anke A., and Vera S. Munde. 2015. Parental attitudes toward the inclusion of children with profound intellectual and multiple disabilities in general primary education in the Netherlands. The Journal of Special Education 49.3: 179–183.

  DOI: 10.1177/0022466914554297

  The present study focuses on the attitude of parents and relating variables concerning their experiences with individuals with disabilities. A self-report questionnaire was completed by 190 parents of children attending general primary schools in the north of the Netherlands. In general, parents showed an overall positive attitude; however, they were most negative about the inclusion of children with profound intellectual and multiple disabilities.

• Downing, June E. 1996. Including students with severe and multiple disabilities in typical classrooms. Baltimore: Paul H. Brookes.

  This book describes successful ways that students with severe disabilities can be included in general education classrooms. Methods and adaptations are described for preschool, elementary, and secondary-age children. Ways to effectively get people resources are examined.

• Giangreco, Michael F., Ruth Dennis, Chigee Cloninger, Susan Edelman, and Richard Schattman. 1993. “I’ve counted Jon”: Transformational experiences of teachers educating students with disabilities. Exceptional Children 59.4: 359–372.

  DOI: 10.1177/001440299305900408

  This paper describes experiences of general education teachers who had a student with severe disabilities in their class. Interviews were used to gather results. Despite teachers’ initial negative reactions to the placement, most found transforming experiences to be positive and beneficial to the students with disabilities, their classmates, and the teachers themselves. Teachers also described support services that are necessary for success.

• Horn, Eva, Joan Lieber, Shouming Li, Susan Sandall, and Ilene Schwartz. 2000. Supporting young children’s IEP goals in inclusive setting through embedded learning opportunities. Topics in Early Childhood Special Education 20.4: 208–223.

  DOI: 10.1177/027112140002000402

  Case studies were conducted in three separate inclusive early childhood education programs located in three different states, which included four children with disabilities and their classroom teachers. Teachers demonstrated increases in use of instructional behaviors toward targeted objectives while children demonstrated concomitant increases in performance of targeted objectives.

• Hughes, Carolyn, and Erik W. Carter. 2008. Peer buddy programs for successful secondary school inclusion. Baltimore: Paul H. Brookes.

  This book describes how to set up, implement, and evaluate a peer buddy program for students at the secondary level. The book is a practical, teacher-friendly text and includes program forms, instructional checklists, and case studies. Additionally, a research basis for peer buddy programs is presented.

• Hunt, Pam, and Lori Goetz. 1997. Research on inclusive educational programs, practices, and outcomes for students with severe disabilities. Journal of Special Education 31.1: 3–29.

  DOI: 10.1177/002246699703100102

  Authors reviewed four special education journals to gauge the state of research on inclusive practices for students with severe disabilities. Outcomes revealed six major themes: (a) parents’ perceptions of the pursuit and impact of inclusive educational placement, (b) issues and practices in inclusive schools and classrooms, (c) the cost of inclusive educational placement, (d) educational achievement outcomes for students in inclusive classrooms, and (e) social relationships and friendships in inclusive settings.

• Janney, Rachel, and Martha E. Snell. 1997. How teachers include students with moderate and severe disabilities in elementary classes: The means and meaning of inclusion. Journal of the Association for Persons with Severe Handicaps 22.3: 159–169.

  DOI: 10.1177/154079699702200304

  An ethnographic study that investigated different ways in which special and general education teachers included students in five elementary schools. Authors describe modifications made to teachers’ roles and classroom routines. Instructional activities are also discussed.

• Jorgensen, Cheryl, Michael McSheehan, and Renee Sonnenmeier. 2010. The Beyond Access model: Promoting membership, participation, and learning for students with disabilities in the general education classroom. Baltimore: Paul H. Brookes.

  A guide for educators on supporting students with disabilities as important members within the general education classroom. Focus is on moving students beyond simple access to meaningful membership and participation in the classroom with purposeful concentration on academic learning in the general education curriculum.

• Odom, Samuel L., Virginia Buysee, and Elena Soukakou. 2011. Inclusion for young children with disabilities: A quarter century of research perspectives. Journal of Early Intervention 33.4: 344–356.

  DOI: 10.1177/1053815111430094

  A summary of synthesis points focuses on critical outcomes for children with disabilities, necessary organizational supports, collaboration among professionals, role of specialized instruction, and benefits for typically developing children. Factors that may affect early childhood inclusion in the future are addressed.

• Schnorr, Roberta. 1990. “Peter? He comes and goes. . .”: First graders’ perspectives on a part-time mainstream student. Journal of the Association for Persons with Severe Handicaps 15.4: 231–240.

  DOI: 10.1177/154079699001500402

  Features one first grade class and its perceptions of a student with severe disabilities who interacted with normal first graders when he attended their class on a part-time basis. Children’s reactions were positive and demonstrate how inclusion can be beneficial for all involved.

• Stainback, Susan, and William Stainback. 1992. Curriculum considerations in inclusive classrooms: Facilitating learning for all students. Baltimore: Paul H. Brookes.

  This book focuses on how curriculum can be designed, modified, and delivered in schools that are attempting to include students with severe disabilities in general education classrooms. Discussed here are curriculum adaptation and delivery, as well as curriculum selection and modification.