Until recently, the above description reflected Mr. Jordan's experiences
and life quite accurately. He had lived in institutions most of his life
and had, for nearly 40 years, engaged in multiple forms of severe and life-threatening
self-abuse. In 1986, Mr. Jordan moved out of the institution and into a
supervised apartment. He now has a full-time job in the community and he
virtually never engages in self-injurious behaviors. We hope that Mr. Jordan's
story will inspire people who want to help people with challenging behaviors
live with dignity and lead a meaningful life in the community.
Mr. Jordan (not his real name) is 46 years old and lives in Syracuse,
New York. He has been labeled as having severe mental retardation and mental
health problems. He was institutionalized in 1949 when he was 6 years old.
He does not speak, but uses vocal sounds, gestures, and pointing to tell
others what he wants. Since he was in his preschool years he had been reported
to have severe self-injurious behaviors, which at times were health-and
life- threatening and often resulted in hospitalizations, extensive tissue
damage, serious malnutrition, and drastic weight loss.
Some of the serious behaviors noted in Mr. Jordan's institutional records
over the years include frequent vomiting, ruminating, head banging, head
hitting, scratching and rubbing, picking and tearing off fingernails and
toenails, body slapping, eye poking, ear poking, and body banging. On the
average he received medical treatment monthly at the medical clinic at
the institution or the hospital emergency room for injuries cause by his
self-abuse. Mr. Jordan also reportedly yelled and cried, frequently hit
and kicked other people, spat, vomited, and excreted on others.
Because of Mr. Jordan's behaviors he rarely attended the day program
outside the institution. In fact, he seldom left the institutional living
unit except to receive treatment for his injuries.
A variety of procedures, both positive and aversive, had failed to modify
Mr. Jordan's behaviors in any significant way within the institutional
environment and the most serious and life-threatening behavior, vomiting,
escalated dramatically in 1985 and resulted in serious weight loss; his
weight dropped down to approximately 90 pounds.
When Mr. Jordan injured himself, he was physically restrained until
he was calm. Restraint was used frequently and sometimes resulted in injury
to the staff as well as to Mr. Jordan. Because vomiting was the most serious
problem, Mr. Jordan was released if he vomited while being restrained.
Mr. Jordan's staff psychologist at the institution devised a pro- active
behavior treatment program for Mr. Jordan, in which he would be taken for
10-minute walks off the unit as a reward for not engaging in self-injurious
behavior. The psychologist noticed that during these walks off the unit
Mr. Jordan did not engage in self- injury. The program was revised so that
he would have longer periods of time spent away from the institution in
a variety of community environments. Continued improvement confirmed people's
suspicion that there was a relationship between self-injury and the institutional
environment. The staff also reported that they avoided using aversive procedures,
such as restraints and time-out, because they considered them to be responsible
for the increased vomiting. In fact, Mr. Jordan seemed to be using self-injury
for a variety of functions, including getting attention and avoiding tasks.
It was as if he used these increasingly negative and life- threatening
behaviors to try to gain control in the institutional environment where
he, in fact, had no control.
As a result of these observations, the psychologist developed an alternative
positive intervention program for Mr. Jordan with the assistance of a professor
from Syracuse University. The alternative plan provided Mr. Jordan with
appropriate and long overdue choices and control of his daily life. The
aversive procedures, such as restraints, were eliminated from his program.
In contrast to past procedures, the emphasis of the alternative intervention
was to implement extensive program and placement changes that would completely
change the circumstances and environments associated with his self-injurious
behaviors and replace them with meaningful community-based alternatives.
The alternative intervention plan consisted of four major components:
The significant relationships established by Mr. Jordan in the past were
also of primary concern. Attempts were made to reintroduce him to his family,
and his primary direct-care staff person at the institution, who had also
become his friend, was asked to move with Mr. Jordan to the apartment.
A second full-time staff person was hired prior to his move in order to
establish a positive relationships before the move from the institution
to the community.
At the beginning of October 1986, Mr. Jordan moved to the house in the
community. Two other men, who also have disabilities, live in the house.
Mr. Jordan participated actively in preparing for the move. For example,
he helped plan, buy, and arrange all necessary personal items prior to
moving. He packed his belongings and placed them in their appropriate place
in his new home. He also participated in selected furniture for the house
and choosing which bedroom would be his.
Mr. Jordan also completed two vocational training rotations at job sites
in the community doing clean-up work and got a full-time job in the community.
As this is being written, Mr. Jordan has been living in the community
for almost three years, and the dramatic improvements in his life and behaviors
have maintained during this time. He continues to work a full day in the
community and no longer requires the one-on-one staffing during the workday
or evening hours at the house. He participates actively in all household
chores, including cooking, cleaning, laundry, and shopping.
He participates in social and recreational activities in social and
recreational activities and attends parties, movies, picnics, and other
social functions in the community. His overall health has improved and
he has gained weight. Mr. Jordan is responding positively to new demands
that reflect a more meaningful life-style and is learning to make choices
and exercise appropriate control of his life.
Mr. Jordan's story teaches us the importance of providing the same kinds
of resources and efforts to implement non-aversive community- bases supports
as those used in restricted group settings. In Mr. Jordan's case, all previous
efforts to modify his self-injurious behavior within the institution had
been unsuccessful; in fact, his condition associated with the aversive
consequence program was judged life-threatening. A long-standing behavior
pattern was finally reversed by providing meaningful experiences that should
have been in place for anyone in any good service delivery system as a
part of a reasonable life-style.
For more detailed description of Mr. Jordan's story, see Berkman, K.
A. & Meyer, L. H. (1988). Alternative strategies and multiple outcomes
in the remediation of severe self-injury: Going "all out" nonaversively.
Journal of The Association for Persons with Severe Handicaps, 13(2),
76-86.