Positive Behavior Supports
for Individuals Who Are Deafblind
with CHARGE Syndrome
Susan M. Bruce, Susan M. Bashinski, Andrea J. Covelli,
Veronika Bernstein, Mary C. Zatta, and Stevi Briggs
Structured abstract: Introduction: The purpose of this study was to identify effective
individualized positive behavior support strategies and cognitive behavior therapy
strategies for young adults who are deafblind. It discusses findings specific to four
young adult students with CHARGE syndrome. Methods: This collaborative action
research study employed collective case study design and elements of grounded
theory analysis. Principles of positive behavior support and modified cognitive
behavior therapy supported the identification and implementation of individualized
behavioral interventions that addressed environment arrangement, sensory needs and
sensitivities, and how adults communicated with the students. Results: Eight themes
were identified as being important to each of the students, although to varying
degrees. These were: provide structure, establish and maintain a positive climate,
address students’ sensory needs and sensitivities, support on-task behavior, support
transitions between activities and environments, support mature behavior, support
students in coping with anxiety, and use adult language supports. Each theme
included multiple strategies. Discussion: Proactive and reactive strategies must be
individualized even when children share an etiology. Educational team members
must know each student’s preferences, likes, dislikes, reinforcers, and unique communication
needs in order to identify and effectively implement behavioral supports.
Modified cognitive behavior therapy may be helpful in addressing the anxiety
experienced by individuals with CHARGE syndrome. Teams require time to collaborate
on behavioral assessment, the identification of individualized behavioral
strategies, and the effectiveness of behavioral plans. Implications for practitioners:
Providing well-structured environments and teaching rules and routines can reduce
anxiety because students know what to expect. Educational team members should
prevent sensory overload, provide structured desensitization opportunities, and teach
relaxation techniques to these students. Adult communication must be positive,
clarify what will happen next, and redirect behaviors when needed.
CHARGE syndrome is one of the most
common causes of congenital deafblindness
(National Center on Deaf-Blindness,
2016). Individuals with this syndrome
may experience impairments in hearing,
vision, smell, balance, and other bodily
systems, although the effect of the condition
on each varies from mild to severe
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©2018 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2018 497
(Davenport & Hefner, 2011). Individuals
often have higher levels of anxiety (Davenport
& Hefner, 2011) and may display
more autistic-like behaviors than do individuals
who are deafblind due to other
causes. Their “behaviors tend to be impulsive,
compulsive, and may involve
aggression against others or themselves”
(Hartshorne, 2011, p. 189). They have
difficulties with self-regulation, which includes
controlling one’s emotions, using social
behaviors to reach goals, and sleeping
habits (Hartshorne & Salem-Hartshorne,
2011). Many exhibit rapid behavioral shifts
in response to sensory overload (Haney,
Hartshorne, & Nicholas, 2015). Communication
frustrations may trigger the expression
of socially inappropriate behaviors
(Hartshorne, 2011). All individuals who are
deafblind experience fewer opportunities to
learn through observation; thus, it is more
difficult for them to know what to expect
and what is expected of them across environments
(Hartshorne & Schmittel, 2016).
Positive behavior support is a valuesbased
scientific approach that applies
principles of applied behavioral analysis
to address socially unacceptable behaviors
that often result in exclusion for
individuals with disabilities (Dunlap &
Carr, 2007; Horner, 2000). Positive behavior
support focuses on proactive rather
than reactive strategies, with the goal of
improving quality of life across settings
(Lucyshyn, Dunlap, & Freeman, 2015),
and the plan goes beyond the individual to
consider the context, including the sensory
demands of the physical environment
and the behavior of other people.
The plan is grounded in understanding the
purpose or purposes of unacceptable behaviors
(Haney et al., 2015), as determined
by functional behavioral assessment.
The plan may suggest changes to the
physical environment, changes in the behavior
of those who interact with the individual
who has a disability, and the teaching
of replacement behaviors. Utilizing the expertise
of a team of interdisciplinary professionals
is critical in determining the least
restrictive intervention and as a source of
mutual support among colleagues and family
members (Bambara & Kunsch, 2015).
Cognitive behavior therapy is an actionoriented
form of psychosocial therapy that
involves replacing maladaptive thinking
and behavior with constructive thinking
and behavior. Hughes (1988) described
two assumptions that form this theory:
perceptions and thinking affect behavior,
and individuals affect their environments.
Thus, intervention that supports change
in thinking may result in measurable
changes in behavior (Hughes, 1988).
Cognitive behavior therapy is the most
common approach to treating anxiety (and
associated obsessive compulsive disorder,
OCD), and it involves teaching the individual
to recognize signs of anxiety, to learn
coping skills (such as relaxation and exercise),
and to engage in systematic desensitization
through repeated exposures to the
sources of anxiety (HelpGuide, 2015).
These exposures allow the individual opThe
authors would like to acknowledge the
Michael and Susan Argyelan Education Research
Fund and the Perkins School for the
Blind Research Fund.
EARN CES ONLINE
by answering questions on this article.
For more information,
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498 Journal of Visual Impairment & Blindness, September-October 2018 ©2018 AFB, All Rights Reserved
portunities to practice new coping skills as
part of the desensitization process.
The application of cognitive behavior
therapy with individuals with intellectual
disabilities is emerging (Taylor, Lindsay,
& Willner, 2008). Pence, Aldea, Sulkowski,
and Storch (2011) suggested the following
modifications for these individuals:
ensure that the caregiver understands the
principles of cognitive behavior therapy
(especially if the individual with a disability
does not); direct the caregiver to model the
appropriate behavior in specific situations,
use simplified language, use visual supports,
provide positive attention for the
demonstration of desired replacement behaviors,
and teach the individual with a
disability to externalize blame for the OCD
(such as telling the OCD to go away) as
opposed to blaming him- or herself.
The purpose of this collective case
study was to use a collaborative approach
to identify and implement individualized
positive behavior support and cognitive
behavior therapy strategies (proactive and
reactive) that were most effective for
seven young adult learners who are deafblind.
This article addresses findings regarding
four learners with CHARGE syndrome
who are deafblind.
Methods
Action research is a recursive, problemsolving
form of research involving multiple
cycles of action or instruction, reflection,
and revised action or instruction
(Bruce & Pine, 2010). This study is a
collaborative action research study employing
collective case study design and
elements of grounded theory analysis
(Glaser & Strauss, 1967; Schreier, 2012).
The Institutional Review Board of the
first author’s university approved the
study, and approved participant consent
procedures were completed. The primary
research question was: What positive
behavior supports will be used by adults
working with each of the young adults
who are deafblind? Sub-questions were:
How does environmental arrangement
and engineering support positive behavior
in each student? What sensory and sensorymotor
integration strategies are helpful in
promoting positive behavior in each student?
What language supports, especially
adult use of sign language (that is, sign
language used by educators and staff
members), support positive behaviors in
students? Which strategies are important
in preventing a negative behavior, and
which are important in addressing a negative
behavior?
PARTICIPANTS
The student participants were a purposeful
sample of four young adults with
CHARGE syndrome who are deafblind,
aged 18 to 22 years. Pseudonyms are used
for all participants. Joe had 20/900 visual
acuity, right field restriction, profound bilateral
hearing loss, and severe delays in
development, and he expressed himself in
individual signs and some sign combinations.
Jon had 20/300 visual acuity in his
left eye and 20/30 in his right eye, superior
field restriction, moderate bilateral
hearing loss, and moderate developmental
delays, and he expressed himself in sign
language. Nathan had a visual acuity of
20/60 in his left eye and 20/800 in his
right, moderate-severe hearing loss, and
moderate developmental delays, and he
expressed himself in sign language. Gail
had 20/360 visual acuity; superior, inferior,
and lateral left visual field losses;
severe bilateral hearing loss; and moderCE
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©2018 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2018 499
ate developmental delays, and she expressed
herself in speech with sign language
as her backup communication form
(especially for receptive communication).
Behaviors exhibited by all the students
included refusing or avoiding work, yelling,
hitting and biting themselves, pushing
or hitting others, property destruction,
and repetitive or ritualistic talk.
Nonstudent participants or coresearchers
were three special education teachers,
four teacher assistants, a teacher liaison
with experience in teaching students who
are deafblind, and one developmental
specialist with expertise in behavioral
interventions and cognitive behavior therapy
adapted for individuals with developmental
delays and deafblindness. Of significance
is that each teacher knew each
student and, in some cases, had worked
with the student in a classroom setting in
previous years. This arrangement allowed
the team to examine behaviors that had
reoccurred or been resolved.
INTERVENTION
The intervention included elements from
positive behavior support and cognitive
behavior therapy that were adapted for
individuals with developmental delays
and individualized for each student. The
teacher participants in this study were already
knowledgeable and skillful in addressing
the behavior of their students.
The purpose of the intervention was to
support them to further refine their efforts
in the context of reviewing data and collaborating
with each other in monthly
team meetings. The team agreed to focus
on interventions that addressed three areas:
environmental arrangement and engineering
(including changes based on
student response); sensory needs (including
students’ responses to sensory input
and sensory-motor needs); and adult use
of language (how and what educators and
staff members verbalized and signed).
Behavioral principles applied comprised:
consideration of antecedents and consequences,
identification of the purpose of
individual behaviors, wait time, redirection,
and reinforcement. Cognitive behavior
therapy principles applied comprised:
the individual as an active participant
(including in making decisions about behavioral
strategies); cognitive rehearsal
through social stories; role play; reinforcement
of conditioned positive responses;
systematic desensitization through carefully
controlled exposures; and cognitive
restructuring, including making
choices, labeling, redirecting, and employing
relaxation techniques.
The monthly team meetings included
the viewing of videotaped segments selected
by either the university researcher
or a teacher for troubleshooting. Subsequent
to the monthly meetings, additional
strategies were implemented. Thus, multiple
cycles of action (implementation of
positive behavior support and cognitive
behavior therapy strategies) and reflection
(to evaluate the effectiveness of the supports
and strategies) occurred. The length
of intervention for the study was six to
nine months, with variation (among students)
caused by graduations.
DATA SOURCES
Videotaped observations
Each classroom was provided with a flip
camera that the teacher participants were
directed to turn on at times that often
evoked inappropriate behaviors. The team
recorded the provision of proactive supports
when inappropriate behaviors were more
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likely to occur (such as during transitions or
nonpreferred activities) and the provision of
reactive supports during actual behavioral
episodes, which were also recorded on the
positive behavior support chart. Video clips
of negative student behavior were destroyed
after being viewed at monthly meetings.
Teacher and teacher assistant journals
Teachers and teacher assistants were encouraged
to record information about both
preventative and reactive behavior supports
using an open-ended journal. The journals
ensured that if a behavior occurred when a
flip camera was not recording, there would
be a record of the strategies employed.
Positive behavior support chart
Teachers and teacher assistants recorded
behavior data on a positive behavior support
chart organized by the three themes
of environmental arrangement and engineering,
sensory needs, and adult use of
language, with spaces to describe the specific
behavior displayed and the date. The
chart provided a space to record student
behaviors that occurred when the flip
camera was off. Some of the data on the
chart was also captured on video.
Existing data sheets (optional)
Two students (Joe and Jon) had pre-existing
behavior data sheets that the teacher was
required to complete after each behavioral
episode. The university researcher accessed
those sheets as an additional data source for
these students.
Individualized positive behavior support
profiles
The research team, including the teachers,
developed an individualized positive behavior
support profile for each of the students.
The profiles detailed which strategies
worked and which did not work to
support each student’s positive behavior.
The profiles were structured using the a
priori categories of adult use of language,
environmental engineering, and sensory
needs. These profiles were both a data
source and a summary form of documentation.
Although we developed one per student
during the monthly meetings, revisions
were necessary across time. The profiles
were then word processed by the researcher,
who added content from the analysis
of the journals and data sheets and then
returned the profiles to the teachers for further
input and corrections.
DATA ANALYSIS
Data were analyzed qualitatively using elements
of grounded theory, including constant
comparison (Glaser & Strauss, 1967;
Schreier, 2012) to identify themes or categories
within and across data sources. During
the intervention period, analysis was
conducted at the individual student level to
identify specific behaviors and strategies for
the profiles. The profiles were included in
monthly discussions, with data across all
data sources added later. Thus, the profiles
captured detailed information from all data
sources and were organized by the original
three a priori categories. The teachers conducted
a member check on the accuracy of
the profiles. After the intervention period,
collective case analysis (of all profiles)
identified themes that were present in all
students’ profiles. Open coding captured a
high level of specificity, and axial coding
was used to identify categories or themes
(McHatton, 2009). A second rater also conducted
a profile analysis, reaching consensus
with the first rater on the identified
themes.
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©2018 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2018 501
Results
Data analysis resulted in the identification
of the following eight themes or categories
that were associated with specific instructional
strategies:
1. provide structure,
2. establish and maintain a positive climate,
3. address students’ sensory needs,
4. support on-task behavior,
5. support transitions between activities
and environments,
6. support mature behavior,
7. support students in coping with anxiety,
and
8. adult language supports.
Each of the themes or categories of strategies
was important to all four students,
but to varying degrees. Examples of strategies
within each theme are presented
below.
THEME 1: PROVIDE STRUCTURE
Providing structure was an important proactive
strategy for each of the students.
Well-defined workspaces were found to be
important in supporting all of them to remain
calm. Joe needed staff members to
show him how much of each physical
space was his own personal space. He
also required a “chill-out” space to be
used when he felt overwhelmed. Jon
required a designated safe place to leave
his unfinished work because he needed
to know that it would be where he left
it and in the same condition when he
returned.
Rules and routines were critical in supporting
appropriate behavior in all students.
The teachers emphasized the importance
of directly teaching the rules,
practicing the rules, reminding students
about the rules, and giving them opportunities
to restate the rules. The best approach
for Nathan was to give a direction,
step back to allow him time to process it,
and avoid repeating the direction. He also
benefited from being reminded that everyone
has rules to follow. Establishing
routines (within and between activities)
and teaching those routines were important
strategies for all students.
Each student had an individual schedule
or calendar system to support their
understanding of the daily routine. These
enlarged visual schedules were presented
on paper or on the computer and were
paired with speech or sign language as
was appropriate for each student. Individual
nuances included the understanding
that Joe needed novelty built into his
schedule, whereas Jon required that the
entire schedule be reviewed whenever an
activity was canceled.
THEME 2: ESTABLISH AND MAINTAIN
A POSITIVE CLIMATE
Maintaining consistency in the classroom
environment (so that students knew what
to expect) helped to keep the climate positive.
When entering other environments, it
was important that students maintained a
physical distance from upsetting events.
Some students were able to initiate this action
of distancing themselves, and
others required support. It was also important
to adjust an environment to keep it
positive. This adjustment might include
changing the temperature of the room or
providing adaptive equipment that would
alter sensory input for a student. The
physical position of the teacher was also
an important consideration. The students
preferred close physical proximity, but
their preferences varied in regard to
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where they preferred the staff person to be
positioned.
The professionals were keenly aware of
the effect of their emotions and behaviors
on the behaviors of their students. They
reported that it was important that staff
members remain positive in their words,
manual signs, voice, facial expression, and
body language. Professionals needed to use
reassuring language paired with a reassuring
tone to support students to be calm.
Other strategies that supported a positive
climate included using appropriate types
and levels of reinforcement, honoring student
preferences (such as Gail’s preference
for the computer), and adjusting educators’
expectations when a student was having a
difficult day. They also found that although
it was essential to offer choices to students,
each had special requirements (for example,
some could respond to open-ended questions,
others required a structured choice of
two items, and still others liked to select
from among options of reinforcers). Offering
socialization opportunities was especially
important for some students. Joe
greatly enjoyed time to be silly with others.
Gail needed conversational supports for
building relationships.
THEME 3: ADDRESS STUDENTS’
SENSORY NEEDS
Each of the four students had unique preferred
materials, as well as sensory needs
and sensitivities. Being responsive to
these needs was identified as an important
proactive strategy for educators. Joe felt
calm lounging in his “comfy” chair with
his body parts touching specific parts of
the chair. He also responded well to deep
pressure and to wearing a weighted backpack
(he even requested additional
weight). He sought out a blanket to put
over his head because he found it comforting.
Joe was sensitive to sound; teachers
found it was best to communicate to
him, “It’s going to be really loud; do you
want to leave?” Jon preferred chairs without
arms, weighted beanbags, and spinning.
A sensory diet that included squeezable objects
and spinning objects was implemented
with Jon. Nathan was very sensitive to
change in temperatures: he disliked both
extreme hot and cold. Regular exercise (including
on a treadmill and through roughand-tumble
play) and stretching supported
Nathan in having a positive attitude. Gail
was sensitive to sounds and accidental
touching. Because she disliked being jostled
by others, crowded spaces and elevators
posed challenges for her. She learned
strategies to cope with excessive sounds,
such as leaving a noisy area, having staff
warn her of noises she might hear as she
transitioned into the next school environment,
or turning down her hearing aids
when she felt overwhelmed.
THEME 4: SUPPORT ON-TASK BEHAVIOR
Staff members identified strategies to
support on-task behavior. All students
benefited from being provided with the
correct amount of wait time for responses.
They also benefited from variable reinforcement
levels, such as higher levels of
reinforcement for nonpreferred tasks and
reminders of the anticipated reinforcer.
Redirection was an effective strategy in
supporting on-task behavior. The staff
members were mindful of distractions, including
those that they might create. Joe
benefited from a “counting down” strategy
so that he would have a foreseeable
end to a nonpreferred activity. He also
benefited from knowing that a preferred
activity would follow a nonpreferred
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activity or series of nonpreferred activities.
“First-then language” was important
to Jon, which included letting him know
that first he would perform the current
task, and then he could engage in his
desired activity. Reviewing his daily
schedule was helpful in supporting ontask
behavior. A “token economy,” which
required the student to perform a specified
number of appropriate behaviors in
exchange for a privilege, was effective
with Nathan, as was allowing him to
choose which activity to do first.
THEME 5: SUPPORT TRANSITIONS
BETWEEN ACTIVITIES AND ENVIRONMENTS
Transitions were supported by consistent
implementation of each student’s daily
schedule, including consistent use of the
“finished” manual sign. The schedule system
also allowed for a preview of what
would happen in the activity or environment
as part of the transition routine.
What educators said and signed during
transitions was also important (see theme
8). Providing sufficient wait time also supported
successful transitions.
THEME 6: SUPPORT MATURE BEHAVIOR
Teachers and teacher assistants often
talked about mature behavior (defined as
adult-like behavior and being cooperative)
because the participants in this study
were young adults. They talked with Gail
and Nathan about examples of “mature”
and “not mature” behaviors (for example,
making loud animal noises is not what a
21-year-old student does). Knowing what
the students were likely to refuse was
helpful in being prepared and in encouraging
cooperative adult behavior. Setting
limits about what was acceptable and not
acceptable was helpful to all students.
Students were expected to increasingly
take responsibility to manage their own
behavior and to initiate the application of
strategies within their repertoire. Staff
members reported that offering a sufficient
wait time for cognitive processing
supported both Joe and Jon in demonstrating
mature behavior. Verbal compromise
often helped Gail to exhibit mature
behavior. Both Gail and Nathan benefited
from the use of a mature behavior sheet,
which included line drawings for both
students and print for Gail. Examples of
“mature behavior” included: use quiet
voice, keep quiet hands, do good work,
make healthy choices, talk about shared
interests, sign slowly, pay attention, be
nice to people, be polite, talk about work
or school, be on time, and share a positive
attitude. Gail also used a self-rating behavior
sheet, with support from her
teacher assistant.
THEME 7: SUPPORT STUDENTS IN COPING
WITH ANXIETY
A variety of proactive and reactive strategies
supported students in being calm
(including strategies discussed under
themes 1 and 3). Unexpected or sudden
touch by another person was identified as
a source of anxiety for all students. The
professionals were mindful about individual
responses to touch, and sometimes
avoided situations when unexpected
touch might occur. Having space to oneself
(an environmental consideration) was
important for staying calm.
Sometimes students engaged in repetitive
talk when anxious, and the topic
might not have been appropriate to the
school setting. Although the professionals
tried to identify and address the cause of
the anxiety, sometimes they needed to
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redirect the talk. Staff members reported
that it was important to know the topics of
repetitive conversations and how they
started. With Jon and Nathan, staff members
learned to avoid “trigger words”
(such as “workroom” or “deaf”) that
could lead to anxiety and repetitive talk.
The professionals had a keen awareness
of Gail’s attempts to engage them in excessive
conversations about the film The
Wizard of Oz (see Nannemann, Bruce, &
Covelli, 2017). Joe and Gail engaged in
repetitive talk about future events (including
seasonal events). Strategies for
addressing students’ repetitive talk included:
knowing students’ preferred or
nonpreferred topics (Nathan and Gail),
acknowledging communication, redirecting
the conversation to an appropriate
time or place (such as asking Nathan to
save the topic and telling him when you
would talk about it), and reassuring the
student. Schedule and calendar systems
were helpful when addressing repetitive
talk about future events.
Specific cognitive behavior therapy
strategies included keeping students informed,
providing calm spaces, considering
the influence of sensory sensitivities (discussed
in theme 3), redirecting to a new
activity if the obsessive compulsive behavior
was difficult for the student to control,
and switching communication forms
(for instance, using tactile signing instead
of visual signing with Joe and signing
instead of speech with Gail). Offering
gross motor exercise was especially important
for Nathan and Jon. Nathan also
benefited from simply being told “not to
worry about it right now.” Deep breathing,
sighted guide, and deep pressure
were effective relaxation techniques for
Gail. Counting also was an important
strategy for her (such as counting to five
to relax and counting first, second, and
third for the sequence of events).
THEME 8: ADULT LANGUAGE SUPPORTS
POSITIVE BEHAVIOR
The professionals in this study deeply
considered the influence of what they said
and signed to their students. They emphasized
the importance of using positive
language as a preventative strategy, and
they expressed directives sparingly. The
professionals were keenly aware of how
to individually phrase spoken or signed
feedback to each student. They also found
it effective to change the form of communication
used, such as changing from visual
to tactile sign language.
The adults had a variety of proactive
language strategies. Providing vocabulary
for student concerns was often an effective
strategy. All four students needed
adults to provide information about the
different environments they were to experience.
If they were transitioning to an
environment that was noisy, it was best to
prepare them. Ample positive facial expression
paired with verbal reinforcement
were especially important for Jon. Pointing
out (to students) how they had been
successful in a similar situation was helpful
to some. Nathan and Gail benefited
from examples of mature and not mature
behaviors. Nathan sought information as
well, but sometimes used questioning to
avoid a task.
Each of the teachers talked about trigger
topics and trigger words and the importance
of identifying them. Joe would
become frustrated if staff members did
not have information to participate in
conversations with him, so they found it
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best to avoid such conversations. The
following journal excerpt about Joe illustrates
the specificity of adult use of
language:
When he starts having negative behavior
(pushing things, ignoring staff
members, not [being] aggressive, but
maybe on edge), give him a reminder:
“If you want to _____ (name preferred
activity), you need good behavior.”
This [strategy] seems to be
effective since it gives him an incentive
instead of just reminding him
about the rules.
Thus, making connections between his
behavior and the potential reinforcer
helped Joe to regain behavioral control.
With him, it was important to use the sign
“celebration” instead of “party.” He had
associated the sign “party” with his bar
mitzvah, so using that sign set up unfair
expectations for him that led to disappointment.
With Nathan, trigger topics
and words included people who had disappeared
from his life, “deaf,” “death,”
and “skinny” (versus “fat”).
Emphasis was placed on teaching Nathan
to think before acting. Adult messages
included: “I want you to think,”
“think before,” “what’s next” (often
paired with his daily schedule), “try and
think before doing,” and “stop and wait.”
The signs for “slow,” “patient,” and “one
minute” also were helpful to Nathan.
Gail struggled with thinking and talking
about events that were not in the present.
A journal excerpt from her teacher
assistant provided examples of successful
language to use in such cases: “Let’s save
that until June”; “You can ask me in
June”; and “When can we talk about that?
Why don’t we save that for _______
(name month)?” Sometimes Gail talked
in great detail about events from the past
because she wanted things to happen in
exactly the same way. As a result, staff
members acknowledged this preference
by making remarks such as, “Are you
asking if the same people are going or if
we’re doing the same thing because you
like things to be the same?”
Discussion
The strongest finding to emerge from this
collective case study is that proactive and
reactive behavioral strategies need to be
individualized even when students share a
specific etiology (such as CHARGE syndrome).
Although all the young adult
participants in this study demonstrated
some similar outward expressions of
behavior, the causes behind such expressions
were unique to each participant.
Educational team members need
to know each student well, including his
or her preferences, dislikes, triggers, reinforcers,
and unique communication
needs, in order to effectively implement
effective behavioral supports.
The educators and staff members in the
study found the process to be useful, as
evidenced by their willingness to extend
the months of the study, individual comments
in journals, and the rich conversations
that occurred in the after-school
meetings to create the individualized positive
behavior support profiles.
IMPLICATIONS FOR RESEARCH
Research specifically targeting the effectiveness
of positive behavior support for
shaping socially acceptable behaviors
(across settings) is warranted (Dunlap &
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Carr, 2007), as is research on the applicability
of cognitive behavior therapy to
students who are deafblind. Anxiety is a
common behavioral characteristic of individuals
with CHARGE syndrome for
which modified cognitive behavior therapy
strategies may be effective, including
the modifications suggested by Pence
and colleagues (2011). Future research
on the efficacy of these strategies
should be grounded in functional behavior
assessments that examine the impact
of physical and social factors that
may affect behavior.
IMPLICATIONS FOR PRACTICE
Carefully planned educational environments
are important in supporting positive
behaviors. A well-structured environment
reduces anxiety because students
know what to expect. Students also benefit
from being informed about the characteristics
of environments that teachers
and others may not be able to control.
Consistent implementation of an individualized
daily schedule supports students
in knowing what to expect and also in
engaging in a nonpreferred task with the
expectation that a preferred task will
follow.
Students with CHARGE syndrome exhibit
a large range of sensory abilities,
sensitivities, and needs. Educational team
members must teach relaxation techniques,
ways to prevent sensory overload,
and strategies for desensitizing a student
to nonpreferred sensory input, while
teaching coping mechanisms. Team
members should consider individual sensory
preferences when selecting reinforcers
for each student.
Those who work with students with
CHARGE syndrome may provide predictability
and reassurance through the
language they use, expressed in either
speech or signing. A functional behavioral
assessment should reveal the trigger
topics and words that educators or staff
members should avoid or limit. Thoughtful
language utilized by teachers will support
students in anticipating what will occur
next, will redirect their behavior when
necessary, and will demonstrate desirable
behaviors. Allowing time for the educational
team to discuss and problem-solve
proactive and reactive strategies is helpful
when developing positive behavior support
plans for students.
LIMITATIONS
Student sample size (N ϭ 4) is the first
limitation of this study. Additionally,
three of the four participants were male.
The nonstudent participants determined
when to turn on the video camera and
what to record on the positive behavior
support chart. It is a limitation that each
of these determinations cannot be verified.
It was difficult for the researchers to
identify clear action research cycles (and
connections between specific strategies
and specific behaviors), because instructional
adjustments were individualized
and adjusted frequently in response to a
student’s demonstrated behaviors.
Conclusion
This study illustrates the importance of
considering the effect of environmental
arrangements, sensory sensitivities of the
students, and how adults use language
(when interacting with students) as part of
behavioral planning. The results of this
study suggest that positive behavior support
strategies combined with cognitive behavior
therapy strategies may be effectively
CE Article
©2018 AFB, All Rights Reserved Journal of Visual Impairment & Blindness, September-October 2018 507
implemented with young adults who have
CHARGE syndrome in order to facilitate
more socially appropriate behaviors and to
reduce challenging behaviors.
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508 Journal of Visual Impairment & Blindness, September-October 2018 ©2018 AFB, All Rights Reserved
significant findings for some statistical tests.
The power the authors refer to is the measure
of how likely a given statistical test is to find
a given size of effect being examined. Given
the large sample size used in this study, the
authors note that they are confident in their
ability to reliably detect very small effects.
If taken to the extreme, however, an overly
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other side of the circus tent.
Robert Wall Emerson, Ph.D., consulting editor
for research, Journal of Visual Impairment &
Blindness, and professor, Department of Blindness
and Low Vision Studies, Western Michigan
University, 1903 West Michigan Avenue, Kalamazoo,
MI 49008; e-mail: robert.wall@wmich.edu.
(Cont. from p. 508)
Mary C. Zatta, Ph.D., director of professional
development, Perkins School for the Blind,
175 North Beacon Street, Watertown, MA
02472; e-mail: mary.zatta@perkins.org. Andrea
J. Covelli, M.Ed., teacher, Perkins School
for the Blind, Watertown, MA; e-mail:
andrea.covelli@perkins.org. Susan M. Bashinski,
Ed.D., professor of special education
and director of graduate programs in education,
Missouri Western State University, 4525
Downs Drive, St. Joseph, MO 64507; e-mail:
sbashinski@missouriwestern.edu. Veronika
Bernstein, Ph.D., developmental specialist
(retired), Perkins School for the Blind; email:
veronikabernstein1@gmail.com. Stevi
Briggs, M.Ed., teacher, Bi-County Collaborative,
397 East Center Street, Franklin, MA
02038; e-mail: stevibriggs@gmail.com. Susan
M. Bruce, Ph.D., professor, Teacher Education,
Special Education, Curriculum & Instruction,
Boston College, 210 Campion Hall,
140 Commonwealth Avenue, Chestnut Hill,
MA 02467; e-mail: susan.bruce@bc.edu.
(Cont. from p. 431)
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