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General Information about Severe and/or Multiple Disabilities

Fact Sheet Number 10 (FS10), 1997



Credits



Source

National Information Center
for Children and Youth with Disabilities

Contents

Definition

Incidence

Characteristics

Medical Implications

Educational Implications

Resources

Organizations


Forums

Learning and Other Disabilities


Related Articles

General Information about Down Syndrome



Definition

People with severe disabilities are those who traditionally have been labeled as having severe or profound mental retardation. These people require ongoing extensive support in more than one major life activity in order to participate in integrated community settings and enjoy the quality of life available to people with fewer or no disabilities; they frequently have additional disabilities, including movement difficulties, sensory losses and behavior problems.

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Incidence

In the 1994-95 school year, the states reported to the U.S. Department of Education that they provided services to 89,646 students with multiple disabilities (Eighteenth Annual Report to Congress, 1996.)

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Characteristics

People with severe or multiple disabilities may exhibit a wide range of characteristics, depending on the combination and severity of disabilities, and the person's age. There are, however, some traits they may share, including:

  • Limited speech or communication;
  • Difficulty in basic physical mobility;
  • Tendency to forget skills through disuse;
  • Trouble generalizing skills from one situation to another; and
  • A need for support in major life activities, e.g., domestic, leisure, community use, vocational.

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Medical Implications

A variety of medical problems may accompany severe disabilities. Examples include seizures, sensory loss, hydrocephalus, and scoliosis. These conditions should be considered when establishing school services. A multi-disciplinary team consisting of the student's parents, educational specialists and medical specialists in the areas in which the individual demonstrates problems should work together to plan and coordinate necessary services.

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Educational Implications

Early intervention programs, preschool and educational programs with the appropriate support services are important to children with severe disabilities. Educators, physical therapists, occupational therapists, and speech-language pathologists are all members of the team that may provide services, along with others, as needed for each individual. Assistive technology, such as computers and augmentative/alternative communication devices and techniques, may provide valuable instructional assistance in the educational programs for students with severe/multiple disabilities.

In order to effectively address the considerable needs of individuals with severe and/or multiple disabilities, educational programs need to incorporate a variety of components, including language development, social skill development, functional skill development (i.e., self-help skills), and vocational skill development. Related services are of great importance, and the appropriate therapists (such as speech and language, occupational, physical, behavioral and recreational therapists) need to work closely with classroom teachers and parents. Best practices indicate that related services are best offered during the natural routine of the school and community, rather than by removing the student from class for isolated therapy.

Classroom arrangements must take into consideration students' needs for medications, special diets, or special equipment. Adaptive aids and equipment enable students to increase their range of functioning. The use of computers, augmentative/alternative communication systems, communication boards, head sticks, and adaptive switches are some of the technological advances which enable students with severe disabilities to participate more fully in integrated settings.

Integration/inclusion with nondisabled peers is another important component of the educational setting. Research is showing that attending the same school and participating in the same activities as their nondisabled peers is crucial to the development of social skills and friendships for children and youth with severe disabilities. Traditionally, children with severe disabilities have been educated in center-based, segregated schools. However, recently many schools are effectively and successfully educating children with severe disabilities in their neighborhood school within the regular classroom, making sure that appropriate support services and curriculum modifications are available. The benefits to inclusion are being seen to benefit not only those with disabilities but also their nondisabled peers and the professionals who work with them.

Schools are addressing the needs of students in several ways, generally involving a team approach. Modifications to the regular curriculum require collaboration on the part of the special educator, the regular educator, and other specialists involved in the student's program. Community-based instruction is also an important characteristic of educational programming, particularly as students grow older and where increasing time is spent in the community. School to work transition planning and working toward job placement in integrated, competitive settings are important to a student's success and the long-range quality of his or her life.

In light of the current Vocational Rehabilitation Act and the practice of supported employment, schools are now using school-to-work transition planning and working toward job placement in integrated, competitive settings rather than sheltered employment and day activity centers.

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Resources

Beukelman, D., & Mirenda, P. (1992). Augmentative and alternative communication: Management of severe communication disorders in children and youth. Baltimore, MD: Paul H. Brookes. (Available from Paul H. Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285-0624. Telephone: 1-800-638-3775.)

Callahan, C. (1990). Since Owen: A parent to parent guide for care of the disabled child. Baltimore, MD: Johns Hopkins University Press. (Available from John Hopkins University Press, Hampden Station, Baltimore, MD 21211. Telephone: 1-800-537-5487.)

Falvey, M.A. (1989). Community-based curriculum: Instructional strategies for students with severe handicaps (2nd ed.). Baltimore, MD: Paul H. Brookes. (See address above.)

Nisbet, J. (Ed.). (1992). Natural supports in school, at work, and in the community for people with severe disabilities. Baltimore, MD: Paul H. Brookes. (See address above.)

Orelove, F., & Sobsey, D. (1996). Educating children with multiple disabilities: A transdisciplinary approach (2nd ed.). Baltimore, MD: Paul H. Brookes. (See address above.)

Rainforth, B., York, J., & Macdonald, C. (1992). Collaborative teams for students with severe disabilities: Integrating therapy and educational services. Baltimore, MD: Paul H. Brookes. (See address above.)

Snell, M.E. (Ed.) (1993). Systematic instruction of persons with severe disabilities (4th ed.). Columbus, OH: Merrill. (Contact Macmillan Publishing Company, 100 Front Street, Box 500, Riverside, NJ 08075-7500. For single copies, call 1-800-228-7854.)

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Organizations

Association for Persons with Severe Handicaps (TASH)

29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
(410) 828-8274
E-Mail: info@tash.org
Web Address: http://www.tash.org

National Rehabilitation Information Center (NARIC)

8455 Colesville Road, Suite 935
Silver Spring, MD 20910-3319
301-588-9284; 800-346-2742(Toll Free)
Web Address: http://www.naric.com/naric

The Arc (formerly the Association for Retarded Citizens)

500 East Border Street, Suite 300
Arlington, TX 76010
(817) 261-6003
E-mail: thearc@metronet.com
Web Address: http://thearc.org/welcome.html

United Cerebral Palsy Associations, Inc.

1660 L Street N.W., Suite 700
Washington, DC 20005
(202) 776-0406; (800) 872-5827 (Toll Free)
(202) 973-7197 (TTY)
E-mail: ucpnatl@ucpa.org
Web Address: http://www.ucpa.org

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Credits

Update June 1997

This fact sheet is made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs. The contents of this publication do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products or organizations imply endorsement by the U.S. Government.

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