Severe and Multiple Disabilities, Education of individuals With
SEVERE AND MULTIPLE DISABILITIES, EDUCATION OF INDIVIDUALS WITH
Individuals with severe disabilities and multiple disabilities are highly diverse in both their abilities and disabilities. What they share is a capacity to learn and a lifelong need for support.
Definition and Types of Severe and Multiple Disabilities
Persons with severe disabilities are: "individuals of all ages who require extensive ongoing support in more than one major life activity in order to participate in integrated community settings and to enjoy a quality of life that is available to citizens with fewer or no disabilities" (TASH, p. 19). Mental retardation is regarded as a characteristic common to those with severe disabilities. Most severely disabled individuals are limited in their ability to communicate, though these skills can become functional with appropriate intervention. In addition, these individuals often have medical conditions or physical limitations that affect their movement, vision, or hearing.
Persons with multiple disabilities have a combination of two or more serious disabilities (e.g., cognitive, movement, sensory), such as mental retardation with cerebral palsy. The U.S. federal government definition includes those who have more than one impairment, "the combination of which causes such severe educational needs that they cannot be accommodated in special education programs solely for one of the impairments" (Code of Federal Regulations, 1999, Vol. 34 Sec. 300.7,[c]). (Dual sensory impairment, or deaf-blindness, is defined as a separate disability group.) Multiple disabilities have interactional, rather than additive, effects, making instruction and learning complex.
In 1996 Fred Orelove and Dick Sobsey defined this group as individuals with mental retardation who require extensive or pervasive supports and who also possess one or more significant motor or sensory impairments and/or special health care needs. These physical and medical problems result in the presence of two or more of the following characteristics: restriction of movement, skeletal deformities, sensory disorders, seizure disorders, lung and breathing control, or other medical problems related to these characteristics, such as skin breakdown or bladder infections.
The two groups overlap somewhat in definition. Multiple disabilities, depending upon the definition used, may or may not include mental retardation as one disability, while severe disabilities requires mental retardation but does not require an additional disability. Some movement disabilities are associated with mental retardation; for example, 60 to 70 percent of those with cerebral palsy have some degree of mental retardation. However, a child with cerebral palsy who does not meet the cognitive requirements of mental retardation might fit the federal definition of multiple disabilities, due to having movement and communication disabilities, but not the definition of severe disabilities. Most individuals who have multiple disabilities also fit the criteria for severe disabilities, while not all with severe disabilities have multiple disabilities.
The primary measures used to diagnose these individuals are individual intelligence tests and tests of adaptive behavior. Early assessment of movement limitations, muscle tone and flexibility, seizure activity, breathing control, sucking and swallowing, vision and hearing, and genetic makeup are also, and prenatal assessment of genetic material or physical identification of deformities via sonograms may be conducted. Accurate psychological testing of these individuals is challenging due to their frequent limitations in controlled movement, vision, hearing, communication, or cooperative behavior. Thus, interviews with family members and educators regarding the person's adaptive behavior skills (i.e., communication, self-care, home living, social skills, community use, self-direction, health and safely, functional academics, leisure, and work) may be more informative and reliable than a norm-based IQ or achievement score.
Definitions of this highly variable group with both severe and multiple disabilities are less precise than some other disability groups, making an estimate of their prevalence difficult. Prevalence ranges from less than .25 percent to .50 percent of the population; and is considered relatively uniform across socioeconomic classes.
Persons with severe and multiple disabilities may carry a variety of diagnostic labels, including:(1) severe or profound levels of mental retardation (IQ scores below 40); (2) mental retardation that requires extensive or pervasive supports for an extended time; (3) autism, childhood disintegrative disorder, or Rett syndrome (several types of autism spectrum disorders); and (4) various genetic disorders accompanied by extensive mental retardation (e.g., Tay-Sachs disease, untreated phenylketonuria, tuberous sclerosis, Lesch-Nyhan syndrome). Individuals with several autism spectrum disorders, by definition, have significant developmental delays in communication and social interaction, and may exhibit extensive limitations in many adaptive skills. Thus, their disability may be extensive enough to fit the definition for mental retardation and severe disabilities, though this is not true for all persons identified with autism (e.g., Asperger's syndrome).
A Brief History of Education of People with Disabilities
In the United States individuals with severe and multiple disabilities are legally entitled to education and other support services; however, these groups do not have the same rights in much of the world. Those with severe and multiple disabilities are identified early in life by their noticeable delays in development or by their physical abnormalities. Many require medical interventions not available until recently; thus, earlier in history (and still today in less-developed countries), many with severe disabilities did not live long. Historically, in many cultures, the presence of severe physical abnormalities at birth has been associated with stigma and shame. Current technology has enabled interventions that extend both the length and quality of life of these persons.
Historical reports of individuals with severe and multiple disabilities who survived indicate that they were subjected to the same poor treatment experienced by persons with milder forms of mental retardation. They suffered greatly prior to the 1700s; but from 1700 to the late 1800s there was an optimistic period, due to education methods that were "discovered" by Jean-Marc-Gaspard Itard (1775–1838) and Edouard Seguin (1812–1880) in France and spread to other Western countries. This period was followed by disillusionment with the nonuniform results of these education practices. From the late 1800s through the 1960s there was widespread building of institutions to house these individuals, and then, starting in the 1970s, the institutional population in the United States was gradually reduced, due primarily to a reduction in admissions. Many former residents were relocated to smaller community-based settings, while others remained in their own homes with services and supports provided to their families. Of those now remaining in state institutions, persons over forty who have profound mental retardation and multiple disabilities dominate the population.
Implications of Educational Legislation
Legislation in the early 1970s addressed the right to education and other habilitation services for all individuals with disabilities. In 1975 the Education for All Handicapped Children Act (known since 1990 as the Individuals with Disabilities Education Act, or IDEA) formed the legal basis for public education for all children, including those with severe and multiple disabilities. IDEA added requirements that are especially valuable for these individuals, including:(1) early intervention starting at birth or whenever a disability is suspected; (2) related services such as physical, occupation, and speech and language therapy, including augmentative and alternative communication (AAC) methods; (3) the requirement for a plan and services to facilitate transition to work and adulthood; and (4) a value placed on inclusion in general education with nondisabled peers. Most states provide services to these students until age twenty-two or beyond, focusing upon functional skill development.
Prior to the 1975 law mandating public education for all children, students with severe and multiple disabilities, if educated, received services in institutions or settings operated by parent groups or state mental health departments. When laws enacted in the mid-1970s required publicly funded special education, most schools established programs for these students but continued to isolate them from their nondisabled peers in separate buildings or self-contained classrooms in elementary schools. Currently in many states, the "least restrictive environment" for most of these students is the age-appropriate school setting alongside nondisabled peers, though not necessarily in the general education classroom. Currently, a majority of these students are served in separate classrooms for most of the school day.
Since 1975 U.S. courts have defined specific portions of special education law. For those with severe and multiple disabilities, several legal battles have resulted in: (1) summer educational programs being required in many states to lessen or prevent skill regression; (2) interventions that enable students to stay at school (e.g., providing catheterization for those unable to urinate voluntarily); (3) related services and technology to assist with movement, positioning, speech, and alternate forms of communication; (4) the mandate to educate all students with disabilities, and not limit services based on an assessment of educational potential; and (5) the provision of regular opportunities for interaction with nondisabled peers and inclusion in general education classrooms–or justification for not providing these opportunities. While all states are required to provide a free and appropriate education for these students, there are many differences in how localities implement the law and thus in the actual quality of educational services for these students.
Educating Students with Severe and Multiple Disabilities
When compared to their peers, most students with severe and multiple disabilities learn more slowly, forget more readily, and experience problems generalizing skills from situation to situation. These characteristics are best addressed when educators follow accepted practices. First, the public education of these students must start early and continue at some level throughout life. Second, all students typically need speech and language intervention, while many others will need physical and occupational therapy. Students with sensory impairments may need interpreters and mobility trainers, while some with medical needs may require nursing services or supervision. Third, because the educational teams of students are often large, close collaboration between members is essential if their expertise is to result in improved student functioning. The benefits of integrating therapy into natural activities is widely accepted over the traditional practice of isolated, or pull-out, therapy.
Fourth, curriculum for these students tends to be functional in nature, reflecting skills needed in everyday life across domestic, leisure, school, community, and vocational domains. Students are taught to make choices, communicate in functional ways (which may include AAC methods such as signing, use of pictures, etc.), develop useful skills that reduce their dependence on others, and learn social skills suited to their chronological age. Fifth, when skills are taught in multiple, normalized settings, generalization problems are lessened. Thus, communication and social skills are most effectively taught in the context of interactions with typical classmates, while job and community skills are best taught during community-based instruction.
Trends and Controversies
Several important trends, some considered controversial because they advocate the inclusion of these students in general education with the necessary supports, reflect improvements in the lives of these students. First, through advancements in medicine and technology these individuals not only experience longer lives, but also have better options in mobility, communication, sensory augmentation, and other areas. Second, starting in the 1960s, there has been gradual improvement in societal attitudes toward people with significant disabilities. This has led to legal protections, special education, community living alternatives, supported employment, and an increase in relevant supports. Third, with the Timothy W. decision (Timothy W. v. Rochester, New Hampshire, School District, 1989), "free and appropriate education for all" was reaffirmed, schools were required to keep current with best practices for educating those with significant disabilities, and the procedure of selecting who can and cannot learn was declared illegal.
The current trend to include individuals with severe or multiple disabilities in classrooms and community activities with their nondisabled peers has been particularly controversial. Special education placement data show gradual growth of students with disabilities who are placed in a general education setting, but much slower growth for students with severe and multiple disabilities. Schools have complained that they are not able to include these students or provide the necessary supports and services to achieve a meaningful education for all involved. Some general education teachers have communicated an unwillingness to have these students in their classrooms, even with support, and they also may lack the required skills necessary to teach these children in a general education classroom. However, there are numerous examples of schools meaningfully including these students in ways that promote social and educational participation, as well as evidence to support the benefits of inclusion for both students with severe disabilities and typical classmates. More research, the dissemination of information on inclusion, and improvements in teacher training are needed.
See also: Adapted Physical Education; Assistive Technology; Autism, Education of Individuals with; Council for Exceptional Children; Mental Retardation, Education of Individuals with; Physical Disabilities, Education of Individuals with; Special Education; Speech and Language Impairment, Education of Individuals with.
Anderson, Lynda L., et al. 1998. "State Institutions: Thirty Years of Depopulation and Closure." Mental Retardation 36:431–443.
Batshaw, Mark L. 1997. Children with Disabilities, 4th edition. Baltimore: Brookes.
Best, Sherwood. 2001. "Definitions, Supports, Issues, and Services in Schools and Communities." In Teaching Individuals with Physical, Health, or Multiple Disabilities, ed. June L. Bigge, Sherwood J. Best, and Katheryn W. Heller. Upper Saddle River, NJ: Merrill/Prentice-Hall.
Dykens, Elisabeth M.; Hodapp, Robert M.; and Finucane, Brenda M. 2000. Genetics and Mental Retardation Syndromes. Baltimore: Brookes.
Education for All Handicapped Children Act of 1975. U.S. Public Law 94-142. U.S. Code. Vol. 20, secs. 1401 et seq.
Individuals with Disabilities Education Act of 1997. U.S. Public Law 105-17. U.S. Code. Vol. 20, secs. 1400 et seq.
Lord, Catherine, and Risi, Susan. 2000. "Diagnosis of Autism Spectrum Disorders in Young Children." In Autism Spectrum Disorders: A Transactional Developmental Perspective, ed. Amy M. Wetherby and Barry M. Prizant. Baltimore: Brookes.
Orelove, Fred P., and Sobsey, Dick. 1996. Educating Children with Multiple Disabilities: A Trans-disciplinary Approach, 3rd edition. Baltimore: Brookes.
Snell, Martha E., and Brown, Fredda, eds. 2000. Instruction of Students with Severe Disabilities, 5th edition. Upper Saddle River, NJ: Merrill/Prentice-Hall.
TASH (The Association for Persons with Severe Handicaps). 1991. "Definition of the People TASH Serves." In Critical Issues in the Lives of People with Severe Disabilities, ed. Luanna H. Meyer, Charles A. Peck, and Lou Brown. Baltimore: Brookes.
Martha E. Snell
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