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People with severe and/or multiple disabilities require ongoing,
extensive support in more than one major life activity. They may
exhibit limitations in speech or communication, basic physical
mobility, sensory awareness, and/or behavior. This fact sheet gives
disabilities coordinators, Head Start staff, and parents the
incidence rates, characteristics, medical implications, and
educational implications of severe and/or multiple disabilities. It
also includes a bibliography and list of organizations.
The following fact sheet is courtesy of the
National Dissemination Center for Children with Disabilities
(NICHCY).
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Severe and/or Multiple
Disabilities
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.
Incidence
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.thearc.org/NetCommunity/Page.aspx?pid=1646
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
This information is copyright
free. Readers are encouraged to copy and share it, but
please credit the National Dissemination Center for Children
with Disabilities (NICHCY). Please share your ideas and feedback
with our staff. |
| Publication of this document is made possible
through a Cooperative Agreement between the Academy for
Educational Development and the Office of Special Education
Programs of the U.S. Department of Education. The contents of
this document 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. |
NICHCY
P.O. Box
1492
Washington, DC 20013
(800)
695-0285 · v/tty
(202) 884-8441 ·
fax
nichcy@aed.org
www.nichcy.org |
See PDF
version:
NICHCY Fact Sheet 10:
Severe and/or Multiple Disabilities [PDF, 56KB]
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Severe and/or Multiple Disabilities.
NICHCY Fact Sheet 10. The National Dissemination Center.
ED/OSERS/OSEP. 2004. English.
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