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A Brief Overview of the Literature and Research
on Training in Decision-Making
for People with Developmental Disabilities
with Recommendations for Curriculum Development
Developed for
COLE Vocational Services
Under a PDF Contract with
Developmental Disabilities Center of Orange County
and
Area XI Board on Developmental Disabilities
by
William T. Allen, Ph.D.
Allen, Shea & Associates
January, 1996
Introduction
COLE Vocational Services was recently awarded a PDF (Program Development
Fund) grant from Orange County Regional Center and Area Board XI to develop
and field test a Consumer Decision Making Curriculum. The purpose of this
project is to develop a curriculum which teaches basic choice making skills
to adults with developmental disabilities. A component of that grant is
a review of the literature regarding choice making for people with and without
disabilities from the perspectives of research in the cognitive, behavioral,
problem-solving, anger management and recreation domains.
Methodology
In order to develop a list of potential references, project staff used the
online askERIC database to search for abstracts containing the greatest
number of the following descriptors: behavior pattern; cognitive processes;
decision making; mental retardation; developmental disabilities; problem
solving; personal autonomy; self management; anger management; adult learning;
self control; locus of control, self determination; and, recreation. Once
a list of abstracts was obtained, full copies of articles that appeared
to be 'on the topic' were purchased from ERIC and reviewed. The following
report is an overview of the materials reviewed along with recommendations
for the development of the curriculum, pre/post and follow-along evaluation
and references.
The Bigger Picture:
Theories of Personality Development
Most articles about decision-making and choice begin with one view or another
of general personality development. One of the most common characteristics
cited in a discussion of individual development is autonomy or self-determination.
Autonomy. The term 'autonomy' comes from the Greek words 'autos'
(self) and 'nomos' (rule or law) and is typically defined as 'self-rule.'
A person is said to be autonomous if he or she views him or herself or
is viewed by others as 'self-governing' or someone who makes decisions without
being constrained by others. The degree to which we are autonomous is said
to be based our perceptions and life experiences of individual freedom,
responsibility, personal identity and control. (Apostoleris, 1995) It does
not, however, imply individual isolation or antisocial behavior. In medical
and health services, the concept of autonomy underlies the practice of informed
consent. That is, when people have the legal capacity to give consent,
they . . . should be so situated as to be able to exercise free power
of choice...and should have sufficient knowledge and comprehension of the
subject matter involved as to enable him to make an understanding and enlightened
decision. (Cavalier, 1995)
Self-determination. A net search for World Wide Web (WWW) documents
containing the text self-determination will bring over 6,000 'hits'
or documents. Those links will lead you to articles on everything from
the struggles in Ireland for independent rule to the care of patients with
terminal diagnoses. There are, in fact, two major and similar definitions
offered in Thorndike and Barnhart (1953). First, [individual] direction
from within only, without influence or force from without. Second,
the deciding by the people of a nation what kind of government they shall
have, without reference to the wishes of any other nation. The common
thread of these two definitions is, of course, making a choice or a decision
(either as an individual or a group) on one's own. For the purposes of
this overview, the following definition will serve us even better:
Self-determination refers to "acting as the
primary causal agent
in one's life and making choices and decisions regarding one's
quality of life free from undue external influence or interference."
Wehmeyer (1992)
Autonomy or self-determination is considered to be an 'intrinsic motivator'
for all of us. The strength of this individual attribute is said to be
based on a number of factors (e.g., cultural, societal). Wehmeyer (1992)
states that while none of us experience unconstrained choice, unlimited
options, and total independence from others, the more experience we have
with making decisions about meaningful things in our lives, the better we
will get at it and the more motivating it will be.
Decision Theory
Decision-making 'behavior' is said to be one aspect of a set of the individual
attitudes and abilities described in the previous section as autonomy or
self-determination. There are, of course, many different variables which
affect decision-making behavior. The process of an individual making a
decision is going to differ markedly from a decision made by a group of
people with differing life experiences and interests. In addition, the
degree of risk (e.g., physical, emotional, financial) that is perceived
in any decision can significantly affect the way we approach it and the
weight that we give to the various options we identify as available to us.
The study of how decisions are made and how they ought to be made is known
as decision theory. In fact, there are two branches of study within this
field, one is known as descriptive and the other as normative. (Grolier,
1996)
Descriptive studies of decision theory focus on how people make choices
among options in a variety of environments (e.g., family, business, political).
Normative studies of decision theory are concerned with courses of action
that will result in certain goals or outcomes not with the actual choices
that people make. Field-based researchers have suggested a third school
of inquiry in decision theory known as prescriptive study which concentrates
on defining ways that individuals can improve their decision-making abilities.
While normative models of decision-making are of interest to mathematicians
and statisticians and are particularly useful when looking at situations
where relationships and outcomes are relatively certain, they do not lend
themselves to the situations that most of us find ourselves in everyday.
That is, situations where outcomes are often uncertain and risks are not
always known. In this overview, we have focused our attention on both descriptive
and prescriptive information about how people with and without developmental
disabilities make decisions and how they can sharpen those skills.
Three 'Typical' Ways to Reach a Decision
Jenkinson and Nelms (1994) have summarized the work of several Australian
researchers who have identified three major ways that we respond when confronted
with a decision:
Defensive avoidance. Individuals using this strategy either put
off making a decision or try to get someone else to make it.
Hypervigilance. Individuals sometimes panic when faced with a decision
that must be made quickly and/or appears to be risky in some way. This
strategy entails making a quick decision that will minimize risk and reduce
stress.
Vigilance. This strategy includes a systematic way of defining the
issue or problem, researching the options, making a choice and evaluating
the consequences of that choice for future reference.
These researchers further state that we all use all of these strategies
and that, as previously stated, our choice of strategies has a lot to do
with the relative risk, threat or stress that we associate with the decision
that must be made.
Jenkinson and Nelms applied this model of decision-making to the responses
of both adults with developmental disabilities and university students of
similar range in age. They provided both groups with scenarios of minor
(e.g., You are offered a piece of cheesecake and you are on a diet and trying
to lose weight.) and major decisions (e.g., You have a chance to move to
a new home that you like and it is a long ways from where you work.) and
asked all participants What would you do? and Why would you do that? The
answers of all participants were then categorized as defense avoidance,
hypervigilant or vigilant.
The results were analyzed statistically and several interesting differences
were noted. First, university students tended to make more vigilant or
systematic decisions and fewer defensive avoidance decisions than adults
with developmental disabilities. Also, individuals with developmental disabilities
tended to make more hypervigilant or quick decisions than university students.
In addition, while individuals with developmental disabilities tended to
make fewer vigilant or systematic decisions in general, they made more vigilant
decisions in minor than in major decision vignettes. While a number of
possible explanations for these differences were offered (e.g., language
abilities, perceived risk), one of particular relevance here is the assertion
that individuals with developmental disabilities are exposed to a fewer
decision-making experiences than their peers without disabilities. Of equal
importance, the authors conclude that there is a need for specific training
in developing decision-making strategies which stresses ways to gather information
about possible options and to think ahead about potential consequences.
The Four (or Five) Step Solution
There are and have been for some time a number of well-articulated approaches
to decision-making or problem-solving available in research and self-help
literature. It's likely that some work better than others, but in the absence
of a strategy we would be immobilized when confronted with the dozens of
minor and major choice alternatives presented to us in everyday life. It's
difficult to trace the origin of the basic process, but the 'typical' approach
(some four and others five steps) is as follows:
- State the problem or issue
- List the possible solutions
- Analyze the 'pros' and 'cons' of each solution
- Pick a course of action and evaluate the outcome
This general template offers an individual a systematic way to look at a
variety of situations, gather information about possible solutions, weigh
their positive and negative aspects, pick a course of action, and to evaluate
the outcome for use in future decisions.
Application to a Variety of Life Choice Experiences
The above problem-solving/decision strategy has been applied to a number
of major and minor life choice experiences. In the field of developmental
disabilities, training in recreation and leisure choice-making has provided
an abundance of 'successful' studies (e.g., Bambara & Ager, 1992, and
Mahon & Bullock 1992)). Benson (1995) summarized the following research
and training applications involving individuals with developmental disabilities:
- determining if you are early or late for your bus to work;
- asking questions of co-workers and supervisors on the job;
- what to do in emergency, injury and safety situations;
- stating your rights; and
- general community living skills (e.g., budgeting your money, problems
with peers).
She also states that this approach to problem-solving is often a component
of cognitive-behavioral interventions for individuals with and without disabilities.
Finally, that it has proven a successful way to manage anger responses
to everyday situations as anger is a signal that there is a problem to solve.
Other Curricula
A number of problem-solving/decision-making training 'packages' have been
developed for use with individuals with developmental disabilities and include:
Some are for use by direct care staff (e.g., activities which will facilitate
choice-making) and others provide a direct instruction format (e.g., lesson
plans). While the approaches are varied, they all have several 'themes'
in common: (1) a value base that considers choice an important part of everyday
life for people with developmental disabilities and that decision-making
is a skill that can be taught; (2) a general four or five step strategy
to reaching a decision; and, (3) scenarios for practice.
Other Considerations
Process and Performance. There are generally two methods
of training used in teaching problem-solving. One emphasizes the general
four or five step template approach (process) and the other focuses on the
behavioral (e.g., eye contact, tone of voice) aspects (performance). Benson
(1995) suggests that both process and performance methods should be included
in training efforts with individuals who are developmentally disabled.
Adult Learners. One of the most useful (and well established)
links between adult development and education is the theory of andragogy.
Naylor (1985) describes this theory as follows:
It's safe to say that adults with developmental disabilities are people
first and that their desire to figure out ways to get through everyday life
is motivating.
Varied Curriculum. While motivation makes the task of adult
educators somewhat easier, it is not enough to guarantee a beneficial learning
experience. One of the characteristics of successful adult education of
importance here is variability in approach to curriculum. That is, adult
educators work hard to vary their teaching with presentation, media (e.g.,
pictures, slides, video) and practice. This strategy is based on some commonly
accepted ideas about retention:
Self-Image. Most of us would agree on a general correlation
between an individual's perception of self-determination and choice and
their view of themselves in regards self-image or self-esteem. Brown and
Goldenberg (1993) found what they described as 'major' improvement in the
self-image of individuals with developmental disabilities who were provided
with greater opportunities for choice in their rehabilitation program than
those who did not receive those opportunities.
Where You Live and Work Makes a Difference. The bottom line
with teaching any new skill is that individuals who have opportunities to
practice, get better at it. Individuals who do not live and work in environments
with opportunities to practice making minor and major choices and solving
problems will not likely get better at that skill. Standcliffe and Wehmeyer
(1995) found that living arrangement has a significant effect on the variability
and availability of choice for adults with developmental disabilities.
Also, that choices about major life matters are significantly less available
than choices regarding day-to-day matters when looking at both living and
working environments.
Care Giver Support and Training. Wherever individuals live
and work, the support and assistance of those who work alongside can make
a real difference. Staff who are skillful in facilitating opportunities
for choice and reinforcing decision-making are critical. In fact, Wehmeyer
(1992) states that in order to promote self-direction and decision-making
we must ". . . focus on changes external to the individual as much
and perhaps more than changes in individual behavior and skills."
Recommendations for a Training Curriculum
The following recommendations will not surprise anyone who has read the
overview. The materials reviewed for this document were 'alive' with ideas.
- There are two distinct approaches to training . One is process training
(which suggests a general template) and the other is performance training
(which focuses on the characteristics of responses to problems, e.g., voice
volume, gestures, etc.) Training in problem-solving for people with developmental
disabilities should include both approaches.
- Teaching a general problem-solving strategy allows for application to
a variety of situations (e.g., recreation, leisure and community activities,
peer issues, emergencies, safety, stating one's rights). Additionally,
this strategy has been used successfully in anger management.
- Adult learners with developmental disabilities: (1) are, by and large,
self-directed (even if decision avoidance directed); (2) bring to the learning
environment, their own set of values and expectations based on their personal
life experiences; and, (3) are typically motivated to learn how to get through
the daily activities of living in a better way. In general, what this means
for the development of a curriculum is: opportunities for self-direction
in the learning process (e.g., flexibility in the agenda based on individual
needs); an emphasis on learning by doing; and a chance to put to use (e.g.,
in role play, small group exercises and discussion) the knowledge obtained
from presentation and real-life experience.
- The curriculum should be developed and delivered in a way that reflects
adult learning principles. Presentations should be kept brief and interspersed
with a variety of activities. Outlines or lesson plans should include:
(1) demonstrations (e.g., role-playing); (2) group discussions; and (3)
structured exercises.
- In addition to discussion, role playing, and feedback, teaching materials
should include visual (e.g., video, photographs, visual prompt cards) training
supplements whenever possible.
- Role playing situations should cover the major 'domain' (for lack of
a better term) areas (e.g., living, working, relationships).
- A possible incentive strategy for attendance might be a raffle ticket
each session with a raffle at the last session for tickets to community
activities, etc.
- Generalization and effectiveness will be enhanced through practice in
a variety of examples of the same real life situation (e.g., "I lost
my wallet", "I lost my movie money", "I lost my bus
pass").
- Staff must be included in the training in some way. A part of the session(s)
for staff could include ideas from participants regarding ways that staff
can support/reinforce problem-solving.
- ·Demographics (e.g., living situation, age, gender), self assessment
(e.g., who makes your decisions about how to spend money) and hypothetical
situations (e.g., minor and major decision situations) should be included
in the development of pre and post evaluations.
References
Allen, Shea & Associates (1996). Building partnerships, supporting
choices: a design for developing supportive relationships through positive
communication and teamwork. Los Angeles: Southern California Regional Center
Directors Association.
Apostoleris, N.H. (1995) Excerpts from Intrinsic motivation theory: some
implications for political, economic, and societal structure. World Wide
Web online materials from Clark University.
Bambara, L.M., Ager, C. (1992). Using self-scheduling to promote self-directed
leisure activity in home and community settings. Journal of The Association
for Persons with Severe Handicaps (Vol. 17, No. 2).
Benson, A.B. (1995). Psychosocial interventions update: problem solving
skills training. The Habilitative Mental Healthcare Newsletter, January/February
(Vol. 14, No. 1).
Brown, F., Belz, P., Corsi, L., & Wenig, B. (1993). Choice diversity
for people with severe disability. Education and Training in Mental Retardation,
December.
Brown, P., Goldenberg, S. (1993). Change in self-image: the impact of
individualized intervention involving consumer choice. Australia and New
Zealand Journal of Developmental Disabilities (Vol. 18, No. 4).
Cavalier, P. (1995) Excerpts from The concept of autonomy. World Wide Web
online materials for a course in general philosophy.
Foxx, R.M., Faw, G.D., Taylor, S., Davis, P.K., & Fulia, R. (1993).
"Would i be able to . . .?" teaching clients to assess the availability
of their community living style preferences. American Journal on Mental
Retardation (Vol. 98, No. 2).
Grolier's Electronic Encyclopedia (1996). Decision theory.
Imel, Susan (1992). Reflective practice in adult education. Columbus,
OH: ERIC Clearinghouse on Adult, Career, and Vocational Education.
IMPACT. (1993/94) Feature issue on self-determination. Minneapolis, MN:
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Jenkinson, J., Nelms, R. (1994). Patterns of decision-making behaviour
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Naylor, M. (1985). Adult development: implications for adult education.
Columbus, Ohio: ERIC Clearinghouse on Adult, Career, and Vocational Education.
Stancliffe, R., Wehmeyer, M.L. (1995). Variability in the availability
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Thorndike. E.L., Barnhart, C.L. (1953) Comprehensive Desk Dictionary. New
York, NY: Doubleday and Company, Inc.
Vitti Ip, S.M., Szymanski, E.M., & Johnston-Rodriquez, S., Fenlon Karls,
S. (1994). Effects of staff implementation of a choice program on challenging
behaviors in persons with developmental disabilities. Rehabilitation Counseling
Bulletin, June (Vol. 37 No. 4).
Wehmeyer, M.L. (1993). Promoting self-determination using the life centered
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Children Convention.
Wehmeyer, M.L. (1992). Self-determination and the education of students
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Wehmeyer, M.L., Ketchner, K., & Richards, S. (1995). Individual and
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Wehmeyer, M.L., Metzler, C. (1995). How self-determined are people with
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