SEVERE AND MULTIPLE DISABILITIES Essay on Chapter 12 Diane Sheffield This chapter covers people with severe disabilities,

the definitions, characteristics and causation. The failure to separate a person from the label can be taken even further when peoples names are actually replaced by disability labels, but the language will be people first. Some people with severe disabilities have significant intellectual, learning, and behavioral differences; others are physically disabled with vision and hearing loss. Most have significant multiple disabilities. Thus, in many circumstances, a disability may be described as severe, but through todays technology and the understanding of how to adapt the environment, individuals with severe disabilities are able to lead constructive, happy, and productive lives in their family, school, and community. One professional cant meet the needs of people with severe and multiple disabilities. The nature of their disabilities extends equally into the fields of education, medicine, psychology, and social services. There are such diverse characteristics that these individuals present and require the attention of multiple professionals which have

created numerous definitions to be used to describe them. Through out history, terminology associated with severe disabilities has communicated a sense of hopelessness and despair. In 1974 ABT Associates description of individuals with severe handicaps was: extremely debilitating, inflexibly incapacitating, uncompromisingly crippling, self-mutilation, ritualistic behaviors and self-stimulated. In 1976, Justen developed a definition that moved away from negative terminology to descriptions of the individuals developmental characteristics. In 1991, Snell further elaborated on the importance of defining severe disabilities on the basis of educational need, suggesting that the emphasis be on supporting the individual in inclusive classroom settings. the Association for Severe Handicap (Meyer, Peck & Brown, 1991), agreeing in principle with Snell, proposed a definition that focused on inclusion in all natural settings: family, community, and school. TASH (formally The Association for Severe Handicap) definition focuses on three factors: 1-the relationship of the individual with the environment (adaptive fit), requiring the individual to cope with demands of various environments as well as

requiring these environments to accommodate the need of the individual, 2-the need to include people of all ages, and 3-Extensive ongoing support in life activities. IDEA and NCLB require students with disabilities be included in statewide and district wide assessments of achievement or provide a statement of why that assessment is not appropriate for the child. The law also requires the use of individual modification. It is estimated that 85% of students with disabilities have mild to moderate disabilities and can participate in assessments with or without accommodations. for students with severe disabilities, such assessments are inappropriate and students do not have to take them. IDEA mandates the use of alternate assessments to ensure that all students are included in the states accountability system. There are five characteristics of good alternate assessments: 1-Careful development and definition of desired student outcome, 2Carefully developed, tested, and refined assessment methods, 3-Professionally accepted standards used to score evidence, 4-Accepted standard setting process used so results can be included in reports and accountability, 5-The assessment process is continuously

reviewed and improved. Quenemoen and Thurlow (2006) In recent years, there has been an increasing awareness of and interest in bioethics particularly as it is related to individuals with severe disabilities. Bioethical issues focusing individuals with severe and multiple disabilities include concerns about the purpose and use of genetic engineering, screening for genetic disease, abortion, the withholding of life-sustaining medical treatment and, growth attenuation. Rapid advances in medical technology have resulted in the survival of an increasing number of individuals with severe and multiple disabilities. This decrease in infant mortality and increase in lifespan have raised a number of serious ethical issues regarding decisions about prevention, care, and selective non-treatment of individuals with severe disabilities. In the case study of The Beginning of a New Circle of Friends, the natural environment, surroundings and peers who have inclusive, positive and supportive attitudes created healthy, emotional experiences for Joanne and Jennifer. The experiences that occurred with these two students wouldnt have occurred in a special

education self-contained classroom or special school because there wouldnt be any non-exceptional students. The teacher, Ms. Nelson can facilitate communication between the families of Jennifer, Joanne, tom, Marsha and Monica to plan community activities a couple times a month on weekends. Establishing friendships for children with severe disabilities in the homeroom is extremely important for them. The homeroom is the foundation for the school day and weather students day will be positive or negative. While the development of friendships benefits the exceptional students, their peers benefit also by learning about them. In the 21st Century, the attitude and progressive policies bring considerable hope to the lives of people with severe and multiple disabilities. Inclusive education is necessary in the school, opportunities to live and work in communities are no longer just a dream; and everyday the critical support that is needed from family, friends, neighbors and professionals becomes more and more a natural part of the lives of people with severe disabilities.