Severe+and+Multiple+Disabilties

Running Head: Severe and Multiple Disabilities

Severe and Multiple Disabilities

Allie E. Cole

Benedictine College


 * Abstract**

The purpose of this paper is to provide the reader with the general knowledge concerning the topic of severe and multiple disabilities. This general knowledge includes numerous definitions of severe and multiple disabilities in regards to physical, emotional, and community life. In addition, this paper includes the five characteristics regarding severe and multiple disabilities. These characteristics include intellectual functioning, adaptive skills, motor development, sensory functioning, and communication skills. The aforementioned characteristics are explained further in the content of this paper. Furthermore, the content of this paper will give the reader a grasp on the information provided about severe and multiple disabilities. Severe and multiple disabilities are grouped together to form a single category. This category includes the following, “Students who have the most significant cognitive, physical, or communication impairments,” (Turnbull, Turnbull, & Wehmeyer, 2007). For instance, Cerebral Palsy and Spina Bifida are included in the highly significant category. However, these impairments occur in combination with one another, which creates the classification of severe and multiple disabilities. According to the current Individuals with Disabilities Education Act (IDEA) regulation in regards to multiple disabilities includes the following definition, “Multiple disabilities means concomitant impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes such severe educational problems that they cannot be accommodated in special education programs solely for one of the impairments. The term does not include deaf-blindness,” (Turnbull, Turnbull, & Wehmeyer, 2007). Separate from multiple disabilities’ definition, IDEA defines severe disabilities as the following, “Children with disabilities who, because of the intensity of their physical, mental, or emotional problems, need highly specialized education, social, psychological, and medical services in order to maximize their full potential for useful and meaningful participation in society and for self-fulfillment. The term includes those children […] who have two or more serious disabilities such as deaf-blindness, mental retardation and blindness, and cerebral palsy and deafness,” (Turnbull, Turnbull, & Wehmeyer, 2007). IDEA provides the above definitions of severe and multiple disability categories. In addition, the Council for Exceptional Children’s article entitled Postsecondary Options for Students with Significant Disabilities defines severe and multiple disabilities as “an individual who requires extensive ongoing support in more than one major life activity […] support may be required for life activities such as mobility, communication, self-care, and learning as necessary for independent living, employment, and self-sufficiency,” (Grigal, Moon, Neubert, 2002). This definition provided by the Council for Exceptional Children includes more functional and community skills within its explanation. In regards to the services provided for people with severe and multiple disabilities, a study was completed in 2005 by the Department of Education. This study reported numerous statistics on the services provided for multiple disabilities cases. These statistics included, “132,333 students, ages 6 to 21, were served in 2003-2004 under the category of multiple disabilities. This number represents 0.2 percent of all students, ages 6 to 21, receiving special education services,” (Turnbull, Turnbull, & Wehmeyer, 2007). However, IDEA does not acknowledge severe disabilities as a separate category, but includes its information within the multiple disabilities category. Therefore, there is zero data represented on the number of severe disabilities served. The spectrum of severe and multiple disabilities are extremely varied, since this particular disability is the combination of other disabilities. Therefore, there are not any character traits or specific details regarding a person with severe and multiple disabilities. However, there are five common themes throughout severe and multiple disabilities. These themes were broken down after processing all of the skills, functions, and development that a person with severe and multiple disabilities partakes in. The five characteristics include information regarding the common factors within severe and multiple disabilities. These five characteristics include, “intellectual functioning, adaptive skills, motor development, sensory functioning, and communication skills,” (Turnbull, Turnbull, & Wehmeyer, 2007). The first characteristic involves the intellectual functioning of the person with severe and multiple disabilities. Students with severe and multiple disabilities vary in their intellectual abilities, for example, “some students develop functional academic skills, such as to count money […] other students have such extensive support needs that their educational programs may focus on learning to make eye contact, track objects with their eyes, and respond to stimuli around them,” (Turnbull, Turnbull, & Wehmeyer, 2007). However, there are three conditions that cause difficultly in the measurement of a student with severe and multiple disabilities regarding their intellectual functioning. These three conditions include the fact that traditional methods of testing are not appropriate, some of the content the students are being tested over is new, and these tests are based on a student’s verbal capacity and students with severe and multiple disabilities are impaired in this area (Turnbull, Turnbull, & Wehmeyer, 2007). Therefore, these tests are inaccurate. In addition, since these tests are inaccurate it makes it extremely difficult to measure the intellectual function of a person with severe and multiple disabilities. In The Exceptional Child, Walter B. Barbe mentions the topic of inaccurate testing with the severe and multiple disabilities category further by stating, “determining multiple exceptionality among the children who are physically handicapped presents problems when the area being investigated is intelligence. The […] child is often unable to perform the tasks on the usual standardized test because of his handicap or because he has not had the kind of experiences necessary in order to pass the test,” (Barbe, 1963). The second characteristic involves the adaptive skills of the person with severe and multiple disabilities. Adaptive skills include, “conceptual, social, and practical competencies for functioning in typical community settings,” (Turnbull, Turnbull, & Wehmeyer, 2007). Most people with severe and multiple disabilities can achieve an amount of self-sufficiency. Therefore, the level of severity in the disability affects the level of independence that the person will acquire. That level of independence ultimately affects the person’s adaptive skills. In the Council of Exceptional Children’s article Postsecondary Options for Students with Significant Disabilities, it states that the “overall goal of providing services in postsecondary settings is to give older students with disabilities age-appropriate settings for their final public education and transition experiences,” (Grigal, Moon, & Neubert, 2002). This ultimately means that the person is able to become more self-sufficient with guidance. Specific instruction is provided in most academic programs, which includes self-care skills, such as “dressing, personal hygiene, toileting, feeding, and simple household chores,” (Turnbull, Turnbull, & Wehmeyer, 2007). Therefore, this self-sufficiency allows them to grow more in their adaptive skills. The third characteristic involves the motor-development of the person with severe and multiple disabilities. People with severe and multiple disabilities usually are extremely impaired in the motor-development category (Turnbull, Turnbull, & Wehmeyer, 2007). Impairments in the motor-development category involve “sensorimotor impairments that produce abnormal muscle tone,” (Turnbull, Turnbull, & Wehmeyer, 2007). Abnormal muscle tone is extremely common amongst individuals with severe and multiple disabilities. This condition includes underdeveloped muscle tone and increased muscle tension. Muscle tone abnormalities can interfere with the person’s functional, everyday tasks (Turnbull, Turnbull, & Wehmeyer, 2007). Although people with severe and multiple disabilities have motor-development impairments most are able to walk with the assistance from “canes, crutches, or strollers,” (Turnbull, Turnbull, & Wehmeyer, 2007). A recent study entitled Effects of Functional Mobility Skills Training for Young Students with Physical Disabilities, showed that students with severe and multiple disabilities need “continuous opportunities for practice” and that these opportunities should be a “critical component of mobility training,” (Barnes & Whinnery, 2002). This study concluded that students with severe and multiple disabilities achieve better results involving their motor-development when schools use systematic mobility training programs (Barnes &Whinnery, 2002). Therefore, motor development amongst those individuals with severe and multiple disabilities involves impairments, but those impairments are often overcome with different techniques. The fourth characteristic involves the sensory functioning of the individual with severe and multiple disabilities. Sensory function with these particular individuals includes, hearing and vision impairments, which are extremely common amongst individuals with severe and multiple disabilities. However, according to IDEA, deaf-blindness is not included within the severe and multiple disabilities category, even though that the combination of vision and hearing impairments are severe and require special instruction. In regards to deaf-blindness IDEA states the following, “Concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs for children with deafness or children with blindness,” (Turnbull, Turnbull, & Wehmeyer, 2007). The fifth characteristic regards the communication skills of the person with severe and multiple disabilities. Many students with severe and multiple disabilities have communication impairments. These impairments include the following, “difficulty objecting to others’ action, drawing attention to their needs (especially their pain), and otherwise communicating,” (Turnbull, Turnbull, & Wehmeyer, 2007). According to the National Dissemination Center for Children with Disabilities, people with severe and multiple disabilities, for the most part, have “limited speech or communication,” (Severe and/or Multiple Disabilities, 2009). Severe and multiple disabilities provide a wide range of impairments. However, the five characteristics mentioned above are continuous themes throughout those individuals with severe and multiple disabilities. In conjunction with those five themes, the National Dissemination Center for Children with Disabilities provides the following, “The person with multiple and severe disabilities has limited speech or communication, difficulty in basic physical mobility, tendency to forget skills through disuse, trouble generalizing skills from one situation to another, and/or a need for support in major life activities (e.g., domestic, leisure, community use, vocational),” (Severe and/or Multiple Disabilities, 2009). These characteristics provide insight regarding those individuals with severe and multiple disabilities.

References

Barbe, Walter B. (1963). The Exceptional Child. Washington, D.C.: The Center for Applied Research in Education, Inc.

Barnes, S. B., Whinnery, K.W. (2002). Effects of Functional Mobility Skills Training for Young Students with Physical Disabilities. Exceptional Children, 68, 313-324.

Grigal, M., Moon, S. M., Neubert, D.A., (2002). Postsecondary Options for Students with Significant Disabilities. Teaching Exceptional Children, 35, 68-73.

Severe and/or Multiple Disabilities, Retrieved from http://www.nichcy.org.

Turnbull, A., Turnbull, R., Wehmeyer, M. L., (2007). Exceptional Lives: Special Education in Today’s Schools. Columbus, OH: Pearson Merrill Prentice Hall.

People with severe and multiple disabilities are impacted through cognitive, physical, and linguistic impairments. In regards to individuals with severe and multiple disabilities, the impact of the aforementioned impairments effects all aspects of the individual’s life. In this study, participants explained three parts of their lives, which were impacted the most by severe and multiple disabilities. These categories include family life, school life, and social life.

Social Life Severe and multiple disabilities are apparent. At first glance, people in society can notice a difference about an individual with severe and multiple disabilities. A Special Education teacher said, “Society is uncomfortable with people that are different,” (AC/RW/Severe and Multiple/11-12-09/3JJ). She continues, “They stare at people with severe and multiple disabilities,” (AC/RW/Severe and Multiple/11-12/09/3II). Not only does society notice people with severe and multiple disabilities, but many times they react in a negative way towards the person. “In public, people walk widely around people with severe and multiple disabilities,” (AC/RW/Severe and Multiple/11-12-09/3HH). Society does not know how to respond to people with severe and multiple disabilities because they are different. Therefore, a Special Education teacher said, “People with severe and multiple disabilities push others out of their comfort zone,” (AC/RW/Severe and Multiple/11-12-09/3EE). Many people do not know how to respond to people with severe and multiple disabilities because they do not understand that specific disability. Plus, severe and multiple disabilities is not as well known as other disabilities. Therefore, people are not exposed to severe and multiple disabilities and do not know how to react towards a person with severe and multiple disabilities. The respondent continues, “Mental Retardation children are cherubs, however, people are uncomfortable with people with severe and multiple disabilities,” (AC/RW/Severe and Multiple/11-12-09/3OO). In fact, the aforementioned statement made by the Special Education teacher addresses how society views all disabilities. She continues, “No one can tell when someone has a Learning Disability or an Emotional or Behavior Disorder, unless they are having an outburst,” (AC/RW/Severe and Multiple/11-12-09/3G). However, “Our society doesn’t know how to deal with severe and multiple disabilities,” (AC/RW/Severe and Multiple/11-12-09/3DD). This study has already addressed that some people do not know how to act appropriately with individuals with severe and multiple disabilities. This is most apparent within the community. A sibling of a person with Cerebral Palsy paired with Mental Retardation said, “Sometimes my sister gets really loud and out of control,” (AC/TZ/Severe and Multiple/10-5-09/2EE). However, a person in society responded negatively towards this participant’s sister. The participant continues, “During a family conference my sister was raising her hands during prayer and a woman said, ‘Get control of your daughter.’ They just don’t understand,” (AC/RW/Severe and Multiple/10-5-09/2KK). The social life of an individual with severe and multiple disabilities is greatly impacted because of society’s outlook towards those with disabilities. A respondent said, “It’s hard to go into public because of the way people look at you,” (AC/RW/Severe and Multiple/11-12-09/3CC). Furthermore, it is not only the individual with a disability’s social life which is impacted, but those surrounding them as well, such as family and friends.

School Life Individuals with severe and multiple disabilities have a different school experience. Students with severe and multiple disabilities are separated into two categories. A participant said, “The first level is severe. They learn basic function skills,” (AC/RW/Severe and Multiple/11-12-09/3H). She continues, “The second level is a little higher,” (AC/RW/Severe and Multiple/11-12-09/3J). People with severe and multiple disabilities that have a higher functioning level have different opportunities than those at the severe level. For example, one of the opportunities that they are able to take advantage of is to work at sheltered work sites. In addition to sheltered work sites, they also learn basic life skills. A participant mentions life skills, “They learn how to ride a bus and use an ATM,” (AC/RW/Severe and Multiple/11-12-09/3K). The higher functioning individuals will learn life skills, however, other students with severe and multiple disabilities will have a completely different school experience than other students. The Special Education teacher stated, “Learning Disability students will graduate High School with accommodations,” (AC/RW/Severe and Multiple/11-12-09/3L). “The moderate students work on life skills. They will graduate with an alternative degree,” (AC/RW/Severe and Multiple/11-12-09/3M). However, “Students with severe and multiple disabilities go to a school setting to be cared for,” (AC/RW/Severe and Multiple/11-12-09/3N). If severe enough, the primary concern for a student with severe and multiple disabilities will be to be taken care of. The curriculum for students with severe and multiple disabilities will be different. The Special Education teacher said, “The children are exposed to music, colors, and art,” (AC/RW/Severe and Multiple/11-12-09/3O). She continues, “The children learn a lot through sensory and tactile learning,” (AC/RW/Severe and Multiple/11-12-09/3P). Therefore, their curriculum involves a lot of sensory and tactile learning. These strategies will help accommodate the student. The modified curriculum is only one part of the school experience for individuals with severe and multiple disabilities. The second part is the student with severe and multiple disabilities’ relationship with other students. The Special Education teacher said, “Children exclude others. As teachers, we try to make up for that,” (AC/RW/Severe and Multiple/11-12-09/3LL). She continues, “We try to get them involved,” (AC/RW/Severe and Multiple/11-12-09/3MM). The classroom dynamics are shifted when people with severe and multiple disabilities are a part of the class. Participants mentioned that people with severe and multiple disabilities are a great addition to any class. However, some students do not know how to respond to students with severe and multiple disabilities. For example, a participant said, “Moderate children are uncomfortable with children with severe and multiple disabilities,” (AC/RW/Severe and Multiple/11-12-09/3KK). This statement shows that students with moderate disabilities are even uncomfortable with students with severe and multiple disabilities. Therefore, regular education students oftentimes find it hard to interact with students with severe and multiple disabilities. The relationships amongst students and children with severe and multiple disabilities requires effort from the teacher to help foster those relationships. In order for a teacher to be able to create a positive learning environment, a few participants stated that teachers need to be someone whom the students can trust. In addition, teachers must be protective of the children in their classroom, always putting their best foot forward for their students. A respondent said, “Teachers are mother bears,” (AC/RW/Severe and Multiple/11-12-09/3NN). She continues, “We need to build trust with kids,” (AC/RW/Severe and Multiple/11-12-09/3FF). Teachers truly impact students with severe and multiple disabilities’ learning environment. In fact, teachers have the ability to accommodate and modify the learning environment for the student to be successful. A participant said, “I had a really great Drama teacher. She helped me with the physical stuff. We worked past everything and we never noticed so much of a challenge,” (AC/LS/Severe and Multiple/9-24-09/1I). School life is impacted on the college level as well for students with severe and multiple disabilities. Especially with living arrangements, colleges work with the student to help accommodate their disability in order for them to be successful. A participant said, “I have my own room. It’s a handicap room, so the bathroom door is bigger and there is a shower chair that transfers me into the shower,” (AC/LS/Severe and Multiple/9-24-09/1J). Other accommodations are made for the student, which helps throughout their life, not just in school. For example, a participant said, “I use an electric wheelchair to get around campus,” (AC/LS/Severe and Multiple/9-24-09/1G). No matter the level of education, one theme remains throughout the student with severe and multiple disabilities’ school life, which is the Individualized Education Plan (IEP). Many participants thought the IEP meetings were good because they provided goals for the student. However, IEP meetings are often stressful for the other people involved, especially the parents. A participant who works at Families Together, a statewide organization for families with children with disabilities, said, “Parents think IEP meetings are overwhelming,” (AC/CZ/Severe and Multiple/11-12-09/4X). She continues, “They feel outnumbered at the IEP meetings,” (AC/CZ/Severe and Multiple/11-12-09/4Z). It is important for parents to attend the IEP meeting because as the respondent states, “The parents are a vital piece of the puzzle,” (AC/CZ/Severe and Multiple/11-12-09/4BB). She continues, “The parents know their children better than anyone else,” (AC/CZ/Severe and Multiple/11-12-09/4D). IEP meetings are often viewed as overwhelming for the family and individual with the disability. However, they are a part of the school experience. So, naturally they affect a student with severe and multiple disabilities’ life.

Family Life The overall family dynamic is impacted when a family member has a disability. Siblings are impacted when their brother or sister has severe and multiple disabilities. For instance, one participant said, “My life would be an entire 360 had it not been for my sister. I don’t know what my life would be like,” (AC/TZ/Severe and Multiple/10-05-09/2QQ). In this study, siblings of people with severe and multiple disabilities, explain their different feelings towards their sibling with a disability. A participant mentioned, “My siblings and I were really embarrassed at first because of my sister,” (AC/TZ/Severe and Multiple/10-5-09/2II). She continues, “I am embarrassed, especially when my sister snorts,” (AC/TZ/Severe and Multiple/10-05-09/2JJ). Throughout a period of time, the participant has felt different thoughts towards her sibling saying, “I’m more used to my sister’s quirks now, but I still get embarrassed,” (AC/TZ/Severe and Multiple/10-05/09/2LL). In this study, embarrassment is a common theme amongst siblings whose brother or sister has severe and multiple disabilities. The participant mentioned that her sister has a disability, yet they still fight like regular siblings. A respondent with severe and multiple disabilities said, “I got into fights with my brother and sister. There was never any special treatment,” (AC/LS/Severe and Multiple/9-24-09/1B). In this study, the siblings fight, but they are extremely protective towards their sibling with a disability. One participant said, “My siblings are very protective of my sister,” (AC/TZ/Severe and Multiple/11-12-09/4FFF). A camaraderie forms amongst siblings when one of their brothers or sisters has severe and multiple disabilities. A participant said, “I cried when I saw my siblings cry about my sister. I didn’t know what was going on, but I was sad because my siblings were sad,” (AC/TZ/Severe and Multiple/11-12-09/2BBB). Siblings are not the only ones impacted by their brother and sister’s disability. Parents are extremely impacted by their child’s disability. The parent’s of a child with severe and multiple disabilities have an entirely different perspective. One participant said, “There are additional stresses for parents with children with severe and multiple disabilities. Such as, are their children going to be okay on campus, do they understand their job, and are they going to be okay at a day program,” (AC/CZ/Severe and Multiple/11-12-09/4K). It is hard for any parent to let go and see their child grow up. This is still true for parents with children with disabilities. Added stresses and concerns come with the territory of having a child with a disability. When parents first learn about their child’s disability it is a traumatic experience. A participant said, “Disabilities affect the family dynamic dramatically, for good or for ill,” (AC/CZ/Severe and Multiple/11-12-09/4II). She continues, “Parents need to learn how to integrate that disability into their family,” (AC/CZ/Severe and Multiple/11-12-09/4KK). Parents will better integrate their child’s disability into the family by first going through what is called, “the mourning process.” One of the participants said, “Every parent has to go through the mourning process,” (AC/CZ/Severe and Multiple/11-12-09/4LL). For example, one participant shared the following, “My mom cried the entire way home when she found out about my sister,” (AC/TZ/11-12-09/2AAA). This is a part of the “mourning process,” which helps parents with children with severe and multiple disabilities begin to accept their child, who happens to have a disability. A participant said, “It doesn’t matter about the label. It’s the same kid you knew yesterday,” (AC/CZ/Severe and Multiple/11-12-09/4NN). Once the families begin to integrate their child’s disability into the family, a respondent noticed that “Families are very unique in the way they react,” (AC/CZ/Severe and Multiple/11-12-09/4DDD). She continues, “Families need reassurance,” (AC/CZ/Severe and Multiple/11-12-09/4M). Families can choose one of two options. The first option is to not accept the disability. One participant said, “Some never really accept the disability,” (AC/CZ/Severe and Multiple/11-12-09/4BBB). She continues, “Some parents always look at the deficits, not the gifts. They only see challenges,” (AC/CZ/Severe and Multiple/11-12-09/4CCC). However, some families choose option two and not only accept their child’s disability, but integrate that disability into their family. A participant said, “A lot of families learn about the disability and love their child,” (AC/CZ/Severe and Multiple/11-12-09/4AAA). She continues, “The parents learn to celebrate the little differences,” (AC/CZ/Severe and Multiple/11-12-09/4XX). For example, “I have seen parents thrilled about their children pushing a toy off a tray,” (AC/CZ/Severe and Multiple/11-12-09/4WW). Whether a family chooses option one or option two, the disability never disappears. The parents will always be reminded of their child’s disability, whenever they see other children their child’s age. A participant said, “The disability hits the parents again and again throughout the years,” (AC/CZ/Severe and Multiple/11-12-09/4RR). She continues, “The disability never goes away and feelings always come back,” (AC/CZ/Severe and Multiple/11-12-09/4QQ). When a person is a parent of a child with severe and multiple disabilities, they are committed to taking care of their child for the rest of their life. A participant said, “The parents have a twenty-four hour job taking care of their child,” (AC/RW/Severe and Multiple/11-12-09/3Y). She continues, “Parents do everything for their children,” (AC/RW/Severe and Multiple/11-12-09/3E). For example, a participant mentioned, “Parents spoon feed their children and change their diapers,” (AC/RW/Severe and Multiple/11-12-09/3F). In this study, the participants agree that even though being a parent of a child with severe and multiple disabilities is challenging and time consuming, it is worth it. Overall, a person with severe and multiple disabilities’ family life is not only impacted because of their disability, but they impact their family life because of their disability. A participant said, “The parents and the siblings learn to not take anything for granted,” (AC/CZ/Severe and Multiple/11-12-09/4ZZ).

In conclusion, a participant mentioned the following, “Disability is a natural part of our existence as human beings,” (AC/CZ/Severe and Multiple/11-12-09/4FFF). A person with severe and multiple disabilities will have their social, school, and family life affected because of their disability. However, they will affect the people around them because of their disability. The sibling of a woman with severe and multiple disabilities said, “My sister is a great teacher. She brings out the best in people,” (AC/TZ/Severe and Multiple/11-12-09/4HHH). 