Definition

People with severe disabilities are those who traditionally have been labelled as having severe to 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.
In the 2000-2001 school year, the states reported to the U.S. Department of Education that they were providing services to 112,559 students with multiple disabilities (U.S. Department of Education, Twenty-fourth Annual Report to Congress, 2002).

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/or
  
• A need for support in major life activities (e.g., domestic, leisure, community use, vocational).

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.

Educational Implications

In the past, students with severe and/or multiple disabilities were routinely excluded from public schools. Since the implementation of Public Law 94-142 (the Education of the Handicapped Act, now called the Individuals with Disabilities Education Act, or IDEA), public schools now serve large numbers of students with severe and/or multiple disabilities. Educational programming is likely to begin as early as infancy. At that time, as well as later on, the primary focus is upon increasing the child’s independence.

In order to be effective, educational programs need to incorporate a variety of components to meet the considerable needs of individuals with severe and/or multiple disabilities. Programs should assess needs in four major areas: domestic, leisure/recreational, community, and vocational. These assessments enable the identification of functional objectives (objectives which will result in the learner’s increased skill and independence in dealing with the routine activities of his/her life). Instruction should include: Expression of choice; communication; functional skill development; and age-appropriate social skills training.

Related services are of great importance, and the multidisciplinary approach is crucial. Appropriate people such as speech and language therapists, physical and occupational therapists, and medical specialists need to work closely with classroom teachers and parents. Because of problems with skill generalization, related services are best offered during the natural routine in the school and community rather than removing a student from class for isolated therapy.

Frequently, 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. For example, in recent years computers have become effective communication devices. Other aids include: wheelchairs, typewriters, headsticks (head gear), clamps, modified handles on cups and silverware, and communication boards. Computerized communication equipment and specially built vocational equipment also play important roles in adapting working environments for people with serious movement limitations.

Integration with nondisabled peers is another important component of the educational setting. Attending the same school and participating in the same activities as their nondisabled peers are crucial to the development of social skills and friendships for people with severe disabilities. Integration also benefits nondisabled peers and professionals through positive attitude change.

Beginning as early as the elementary school years, community-based instruction is an important characteristic of educational programming. In order to increase the student’s ability to generalize (transfer) skills to appropriate situations, this type of instruction takes place in the actual setting where the skills will be used. As students grow older, increasing time is spent in the community; high school students may spend as much as 90 percent of their day there. Programs should draw on existing adult services in the community, including group homes, vocational programs, and recreational settings.

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.

Resources

Downing, J.E. (2002). Including students with severe and multiple disabilities in typical classrooms: Practical strategies for teachers (2nd ed.). Baltimore, MD: Paul H. Brookes. (Telephone: 800.638.3775. Web: www.brookespublishing.com)

Klein, M.D., Chen, D., & Haney, M. (2002). PLAI (Promoting learning through active interaction): A guide to early communication with young children who have multiple disabilities. Baltimore, Paul H. Brookes. (See contact information above.)

Orelove, F., & Sobsey, D. (1996). Educating children with multiple disabilities: A transdisciplinary approach (3rd ed.). Baltimore, MD: Paul H. Brookes. (See contact information above.)

Rainforth, B., York, J., & Macdonald, C. (1997). Collaborative teams for students with severe disabilities: Integrating therapy and educational services (2nd ed.). Baltimore, MD: Paul H. Brookes. (See contact information above.)

TASH Newsletter. Monthly newsletter from TASH. (See contact information under "Organizations.")

Organizations

TASH (formerly Association for Persons with Severe Handicaps)
29 W. Susquehanna Avenue, Suite 210
Baltimore, MD 21204
410.828.8274; 410.828.1306 (TTY)
E-Mail: info@tash.org
Web: www.tash.org

National Rehabilitation Information Center (NARIC)
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706
301.459.5900; 800.346.2742(Toll Free)
E-Mail: naricinfo@heitechservices.com
Web: www.naric.com

The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
301.565.3842
E-Mail: Info@thearc.org
Web address: www.thearc.org
For publications: www.TheArcPub.com

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)
Web: www.ucp.org