Like their peers
without identified disabilities, individuals with Down
syndrome may display behavior that is off task, noncompliant,
interferes with learning or disrupts on-going activities.
For any individual, these challenging behaviors may be
occasional events or may represent consistent patterns
of performance.
Just as the last 15 years have witnessed tremendous change
in both the values and practice of special education,
so have researchers and practitioners in the field of
behavior management dramatically changed how they think
about and deal with "behavior problems." There
was a time when challenging behavior was treated as if
it were something undesirable that had to be eliminated
or reduced. This attitude focused more attention on the
effectiveness of a behavior intervention (did it eliminate
the challenging behavior?) than on other characteristics
of the intervention (was it artificial, stigmatizing,
or inappropriate in school or community settings?). There
seemed to be an unstated assumption that for individuals
with disabilities, any intervention was acceptable as
long as it worked.
Recently school and community services for individuals
with disabilities have begun to focus on lifestyle outcomes,
not skill acquisition or behavior management goals in
isolation. Quality programs now begin by defining a desirable
lifestyle for each individual (describing presence and
participation in the community, variety of activities,
opportunities for choice among an array of valued activities,
and so on) and then design behavioral and instructional
supports necessary to ensure access to that lifestyle.
However, as school and community services have moved to
include and integrate individuals with disabilities, practitioners
have become more sensitive to the social impact of behavior
interventions. As society has been more strongly guided
by the principle of normalization and has acknowledged
the basic rights of individuals with disabilities, educators,
employers and family members have been forced to question
the appropriateness of some procedures that had become
accepted practice. All interventions are not equal. Those
that violate individual rights or that are unacceptable
to normal school and community audiences now merit careful
scrutiny.
Research has shown that so-called maladaptive or inappropriate
behavior can serve an important function for an individual
with a disability. For individuals who have limited communication
skills or who lack a formal communication system, aggressive
or noncompliant behavior may be the only means to communtcate
wants and needs or to exercise some control over the environment.
Seeing students, not as "naughty," but as attempting
to communicate, underscores the importance of teaching
acceptable methods of communication as a way of dealing
with challenging behavior.
Any effort to develop guidelines for the use of behavior
management techniques is complicated by several factors.
First of all, there is tremendous variability across families
both in the procedures for discipline and in the standards
set for acceptable behavior. What is tolerable behavior
in one family may be intolerable in the next. What is
an acceptable disciplinary procedure to one family may
be unacceptable to another. It is difficult to offer guidelines
for school and community programs when families themselves
display such diversity.
A second factor that makes the discussion of behavior
management difficult is the very fact that makes the discussion
necessary: the horror stories of things done in the name
of managing challenging behavior. There are reports of
children left unattended in time-out closets for extended
periods of time; of children restrained so long that they
enjoy no educational programming; or individuals whose
behavior is managed with chemicals in the absence of active
programming; of people who are "treated" with
procedures that hurt, humiliate or deny basic rights.
Sometimes the "problem" seems relatively minor
(e.g., failure to comply with a teacher's instruction);
sometimes the challenge is clearly more significant (e.g.,
high rates of head banging or other self-injurious behaviors).
Despite the difficulties, it seems important to offer
guidelines for the use of techniques to support individuals
who exhibit challenging behavior. The guidelines are meant
to help identify key features and articulate values that
are consistent with quality programs for the individuals
with Down syndrome. The guidelines are derived from several
sources: a) the research literature on behavior management,
b) model programs that implement state-of-the-art procedures
and deliver effective services for people with disabilities,
and c) values about the rights of individuals with disabilities
and their place in society. The intent is to guide the
design of services, not to condemn or condone any particular
practice.
The origin of challenging behavior is not the person with
a disability but in the interaction of person and the
environment. The style or manner of making requests can
elicit from the person with Down syndrome tremendous cooperation
or resistance. For students, behavior challenges may,
in fact, reflect curriculum problems. Students who are
confronted with learning tasks that are meaningless or
that are the same day after day, may exhibit challenging
behaviors to escape the boredom of the instructional setting.
Likewise, students who repeatedly face tasks that are
too demanding or lessons that fail to provide the support
necessary for actual learning, are likely to develop behaviors
that allow them to escape such aversive situations. Similarly,
a worker who is assigned jobs that are either too difficult
or insufficiently challenging may display inappropriate
behavior to communicate his or her dissatisfaction.
Challenging behavior may result from poor classroom or
program organization. For example, in group homes where
there may be inadequate supervision, extended periods
of unstructured activity, or poorly defined transitions
between activities, there may be a high probability that
residents will display challenging behaviors.
Behavior, whether or not it is socially acceptable, frequently
serves to communicate wants, needs, or preferences. This
is especially true for individuals who may not have an
effective system of verbal communication. A program to
eliminate "bad behavior" may in fact eliminate
a person's only means of expressing a preference.
Functional analysis -- systematic observation to determine
the function served by challenging behavior, the consequences
that maintain it, and the circumstances that occasion
it -- should be an ongoing process. Once is not enough.
The same stressors that may disrupt the behavior of people
without apparent handicaps (illness, exhaustion, disruptions
of routine, divorce, death of a family member, adolescence,
high stimulus situations, and so on) may also lead to
the display of challenging behavior by people with disabilities.
Teachers, supervisors, and employers should make a reasonable
effort to understand the person with a disability before
identifying a "behavior problem."
The management of challenfng behavior cannot occur in
isolation. There is no clear line between an individual's
"behavior plan" and the other aspects of his
or her life, Where someone lives or works, the tasks he
or she confronts on a daily basis, and opportunities for
choice and control can all affect challenging behavior.
All behavior plans should be part of a larger, comprehensive
plan of support and development.
The goals behind any behavior programs should be to increase
appropriate behavior rather than simply decrease inappropriate
behavior. Programs which focus exclusively on reducing
inappropriate behavior teach what not to do, not what
to do.
The presence of a challenging behavior is not an excuse
for the lack of positive programming. The more inappropriate
behavior and individual displays, the more important it
is that he or she be taught effective and appropriate
ways of interacting with the environment.
Providing effective training and an organized environment
are powerful strategies for managing behavior. When individuals
are actively engaged in instructional activities of an
appropriate level of difficulty and when the operating
rules of the program are clear and consistently applied,
the probability of challenging behavior is significantly
reduced.
The primary strategy for dealing with challenging behavior
should be positive approaches that emphasize developing
adaptive and socially acceptable replacement behaviors.
Since the ultimate goal for students with Down syndrome
is that they live, work, and play in integrated community
settings, any behavioral intervention should be acceptable
to and feasible in those settings. For example, if a procedure
cannot be used in a regular educational setting, its use
in a special education classroom is suspect.
The goal of an intervention should be to increase participation
in, not remove individuals from, integrated settings and
activities with peers without disabilities. Integration
is as important to behavior management as it is to services
in general. For example, participation in an integrated
school program ensures that students will have models
for appropriate behavior and that teachers have a clear
reference for what amount of deviance is, in fact, age
appropriate.
The standards established for appropriate behavior should
recflect the standards of the natural environment. Individuals
with Down syndrome should not be expected to comply or
remain on task 100% of the time; most people without disabilities
would be identified as having behavior problems if held
to such criterion.
Programs should emphasize the use of natural consequences
for behavior rather than employ elaborate or artificial
reinforcers. Developing programs that rely on natural
consequences increases the probability that behavior change
can be maintained by the natural environment.
From the onset, the goal of a behavior intervention should
be for the person to learn to manage his or her own behavior.
Training an individual to monitor and evaluate his or
her performance is as important as reducing the challenging
behavior.
The expectations and consequences of a behavior management
program should be clear and should be communicated to
the person whose behavior is being addressed.
 Issues
of motivation and behavior management should be addressed
in a student's individualized education program (IEP)
or an adult's individualized program plan. Parents are
key members of the team which develops those plans.
There should be agreement about both the goals and methods
of dealing with challenging behavior.
Family involvement is critical to consistent implementation
of any behavior program, Procedures to change behavior
will be most effective when the same strategies can
be used by individuals in the home as well as by those
at school or work.
Replacing challenging behavior with socially acceptable
alternatives will necessitate on-going problem solving
by teachers, parents, and others who provide services.
Procedures designed to reduce inappropriate behavior
should not stigmatize, humiliate, or call unnecessary
attention to an individual's disability. The presence
of a disability does not confer license for treatment
that is disrespectful or dehumanizing.
In general, only procedures that would be acceptably
used with individuals without disabilities should be
employed to manage the behavior or individuals with
disabilities. For example, if an intervention would
be unacceptable for use with students without disabilities,
it would be difficult to justify its use with students
with disabilities.
The complexity and intrusiveness of an intervention
should be balanced with the benefit that will accrue
to the individual. The least intrusive intervention
should be presumed to be the most appropriate one.
Procedures that are intrusive or atypical, or that appear
aversive to the person, or discomforting to the teacher,
employer or onlookers, should be used in limited and
controlled conditions. There should be a) documentation
that the program uses a functional curriculum and employs
effective procedures to deliver training and support,
b) a comprehensive functional analysis to ensure that
the intervention has a reasonable probability of success,
c) a review process to ensure informed parent consent
and to verify that the nature of the challenging behavior
justifies an extraordinary intervention, d) a commitment
to use the procedure only on a short-term basis, e)
simultaneous use of positive procedures to build appropriate
behavior, and f) careful monitoring of both the person's
and the trainor's behavior.
Procedures that are intrusive or atypical should never
substitute for positive programming.
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There are procedures for dealing with challenging behaviors
that may be effective in reducing behaviors that may
be effective in reducing behavior but which fail to
meet other important criteria. The National Down Syndrome
Congress does not support the use of procedures which
(a) involve the delivery of pain;
(b) result in tissue damage to the individual with a
disability; or
(c) violate local standards of dignity and respect.
The NDSC encourages educational, employment, residential,
and recreation services to adopt procedures for managing
challenging behavior that
(a) acknowledge the role of environmental variables
in developing and maintaining behavior;
(b) respect the dignity of the individual with a disability;
and
(c) develop and support competent performance in integrated
environments.
Please quote fully and reference the National Down
Syndrome Congress.
Prepared for and Approved By:
The Professional Advisory Committee
National Down Syndrome Congress
January, 1990
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