Copyright CAAC 2011
09/05/2011
- ACES Augmentative Communication and
Empowerment Supports
• Dr Diane Bryen
• Temple University, Philadelphia, USA
• India, Australia and South Africa
The importance of informal and
community support in facilitating
empowerment of youth with CP who
use AAC
Michal Harty (PhD)
Kitty Uys (PhD)
2
Empowerment for individuals
with CP who use AAC?
Why empowerment
• Empowerment well researched in psychology
literature
• We know that AAC technologies enable
individuals with CP to express who they are and
increase their communication skills and
participation in social networks (Blackstone,
2007).
• However within field of intervention/
rehabilitation for people with disabilities concept
not fully explored
• Also that “finding your own voice” is vital for
developing empowerment (Bryen, 1995)
• Hierarchical stages of empowerment provides
richer understanding of the empowerment
construct
• But lack of appropriate assistive technology has
a negative impact on development of
communication competence (Light, 1989; 2003)
and ultimately empowerment.
• Allows us to explore interplay between factors
which contribute towards empowerment
3
Arai’s (1997) stages of empowerment
Why empowerment in a developing
country context?
1.Powerlessness Choices made on their behalf
Discourage community participation
• Cumulative impact of disability and
poverty and other social
disadvantages (Emmett, 2005)
• Perceived lack of options for young
adults with disabilities (employment,
independence, participation etc)
• Lack of competent and successful
role models who use AAC (Tonsing,
Alant & Lloyd, 2005)
• Adults not encouraged to explore
socially valid adult roles (Bryen, 2003)
5
Copyright CAAC 2011
4
2. Awareness of
new possibilities
Desire for change is expressed
3. Connection
and learning
Resources and support systems are identified to
expand choices and opportunities
Increases self-confidence and perceived sense of
control
4. Mobilization
and action
Active participation in community activities results in
an increase in competence, start to voice their
opinions with confidence
5. Contribution
Active, contributing citizen
Emotions e.g. frustration and anger are expressed
6
1
Copyright CAAC 2011
09/05/2011
Programme structure
Programme aims
• 1 week immersed onsite training for
AAC user and their personal
assistant per year
• Accessible venue on
university campus
• After onsite – return to community
and rely heavily on local support
networks
• Participants return annually while
still showing improvement
1. To improve participant’s
communication competence
2. To facilitate the empowerment
process and planning for their future
3. To expose participant to options of
employment and independent living
7
8
Programme measurement
Programme participants
• Capacity data: participants completed Likert
scale self-report questionnaire on their current
level of competence. Consisted of 2 sections:
•
•
•
•
Young adults between ages of 18-30
Have between 5 – 10 participants each year
Majority have CP
Come from rural communities across South
Africa
• All attended some formal schooling
• None had high technology AAC devices before
entering the programme (sponsored)
• Level of communication competence and
empowerment differed on entry
– Communication competence (e.g. I can effectively
use my communication device to communicate with
people who don’t know me)
– Empowerment (e.g. I know what my rights are as a
South African with a disability)
• Plotted observable empowerment indicators
(Arai, 1997). Consisted of:
– Written, oral and visual communication from the
sessions during the week, i.e. mind map for daring to
dream
9
Data trends
Overview of results
• Empowerment develops on a continuum
• Discussion will centre around 3 participants over
4 years
– Self-rating increases substantially from stage 3 to
stage 4 but then decreases again when reaching
stage 5.
• Reciprocal relationship between intrinsic
motivators and integrated extrinsic motivators
and level of empowerment
• Contrast capacity data with observable
empowerment indicators
• Provide possible explanations for the patterns
observed across participants
– intrinsic motivation linked to higher levels of
empowerment.
• Reciprocal relationship between communication
competence and empowerment
11
Copyright CAAC 2011
10
• Supportive community context is critical
– informal and community support acts as either a
barrier or facilitator of empowerment)
12
2
Copyright CAAC 2011
09/05/2011
Discussion
Participant A
Communication
competence
•Poor literacy skills
T
1
•Tablet computer with the
Grid Software and two
switches
T1
T
2
T
3
T
4
T2
Empowerment
T3
Communcation
competence
•Reliant on pre-stored
vocabulary
•Unable to edit/store
messages
•Not optimal communication
competence
T4
STAGE
1
STAGE
2
STAGE
3
STAGE
4
STAGE
5
0
20
40
60
80
Comminity Support
Motivators
•Environmental barriers Poor support systems
(caregiver, rehab services)
•Internal locus of control
•Motivated to communicate
•Could not mobilize his
•Became more empowered external environment to
than immediate support
meet his needs
system (caregiver) which
•Poor communication
led to frustration and
confidence mainly because
helplessness
of poor sense of
•Saw regression to previous achievement
stages of empowerment
•Resilience was effected by
development
his inability to communicate
effectively
100
13
Discussion
Participant B
T
1
Communication
competence
•Laptop with The Grid
software, direct access
T1
T
2
T
3
14
T2
Empowerment
T3
Communication
Competence
•Reciprocal relationship
between external and
internal locus of control
•Substantial gains on
linguistic and operational
•Relies heavily on wellcommunication competence established support
(Light, 2003)
systems for solving
problems to further his
•Increase in strategic and
goals
social competence (Light,
2003)
T
4
Comminity Support
Motivators
•External locus of control
•Motivated to communicate
•Communications are
valued and sought after
•Successful in
communication efforts
•Good social competence
increases resilience
•Impacts on independence
and self-determination
T4
STAGE
1
STAGE
2
STAGE
3
STAGE
4
STAGE
5
0
20
40
60
80
100
15
Discussion
Participant C
T
1
Communication
competence
•Laptop with the Grid
software
T1
T
2
T
3
T
4
T2
Empowerment
T3
Communication
Competence
T4
STAGE
1
STAGE
2
STAGE
3
STAGE
4
STAGE
5
0
20
40
60
80
100
17
Copyright CAAC 2011
16
•Substantial gains in all 4
areas of communication
competence (Light, 2003)
•Increase in personal
control and problem solving
Comminity Support
Motivators
•Moved to an area where he •Internal locus of control
received little support
•Social standing in his
community due to visibility
•Increase internal locus of
and contribution on 2
control
disability community forums
•Had to rely on own
•Communication
problem-solving and
competence allows him to
decision making skills
voice his opinions and
•Build up a support network become a leader in his
in his new context
community
•Taking on the role of
•Confidence and selfsupporter
esteem grew with
communication competence
•Resilience linked strongly
to good problem-solving
skills
18
3
Copyright CAAC 2011
09/05/2011
Conclusion
Video clips: 2009
A
B
• Not advisable to work on empowerment goals
without first establishing communication
competence.
• Communication competence not the only indicator
in maximising empowerment.
• Role of the community and informal support
systems can be either a facilitator or barrier in the
development of empowerment
• Importance of relevant role models cannot be over
emphasised in the development of empowerment
• Need additional research to further understanding
of interplay between factors impacting on
development of empowerment.
C
19
20
Thank you to all the
participants who
taught us so much
Kitty Uys
[email protected]
+27 12 420 3851/2001
Michal Harty
[email protected]
+27 12 420 4727/2001
Presentation available
www.caac.up.ac.za
21
22
Programme content
In Memorium
Components of
empowerment
Description of
components
Examples from FOFA
programme
Intrapersonal
Skills development to
maximize potential
Communication
competence
Assimilating information
from role models
Goal setting
(60% time allocation)
Interactional
(25% time allocation)
Behavioural
Luvuyo Tyulu
(15% time allocation)
23
Copyright CAAC 2011
Master adaptive behaviour Problem solving skills
across life domains
Resource mobilization
Decision making skills
Goal realization and future
planning
Influences social and
political systems in the
community by participation
and contribution
Links with community
groups
Opportunity to share
narrative/story
Opportunity to be a role
24
model
4