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Empowerment of youth with cerebral palsy through the use of AACAnnual Conference of the National Association for Persons with Cerebral Palsy 16 May 2012

Prof. Kitty Uys (PhD)Ms. Karin van Niekerk (M. ECI)

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Introduction• People with physical disabilities are vulnerable to

disempowerment, but the concept in this field is not fully explored

• Implementation of the FOFA programme – facilitate empowerment

• Existing literature evaluates empowerment on a skills or capability level

• However, skills coupled with the hierarchical developmental stages of empowerment provides richer understanding of the empowerment construct

• This allowed us to explore interplay between factors which contribute towards empowerment

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Why empowerment for AAC users?• AAC – Augmentative & Alternative Communication• AAC technologies enable AAC users to express themselves,

increase their communication skills and participate in social networks (Blackstone, 2007)

• “Finding your own voice” is vital for developing empowerment (Bryen, 1995)

• But lack of (appropriate) assistive technology has a negative impact on development of communication competence (Light, 1989; 2003) and ultimately to take control

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4Model of Empowerment (Fawcett, et al., 1994)

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6Model of Empowerment (Fawcett, et al., 1994)

5. Contributing

4. Mobilization and action

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3. Connecting and learning

1. Powerlessness

2. Awareness of new possibilities

Theoretical framework

• Arai (1997) 5 stages of empowerment process:

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Theoretical framework (cont.)

• Zimmerman’s (1995) nominological network for empowerment:

– 3 components:• Intrapersonal• Interactional• Behavioural

• The FOFA programme was developed based on all of the above components

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Programme aims

1. Improve communication competence

2. Facilitate empowerment process and planning for future

3. To expose to options of employment and independent living

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Programme structure

• 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

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Programme contentComponents of empowerment

Intrapersonal (Skills development)

60% time allocation

Interactional(Adaptive behaviour)

25% time allocation

Behavioural (Community Participation)

15% time allocation

•Communication competence•Assimilating information from role models•Goal setting

•Problem solving skills•Resource mobilization•Decision making skills•Goal realization and future planning

•Links with community groups•Opportunity to share narrative/story•Opportunity to be a role model

Examples from FOFA programme

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Programme participants• Young adults between ages of 18-30• Include between 5 – 10 participants each year• All have physical disability – mostly Cerebral Palsy• Mostly 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

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Programme measurement

1. Skill and capacity data

– Self-report questionnaire on level of competence

– 2 sections:• Communication competence (12 items)• Empowerment (12 items)

– 4-point Likert scale (Strongly agree Strongly disagree)

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Programme measurement

2. Empowerment indicators– Collected written, oral and visual communication from

the sessions during the week

– Highlighted observable empowerment indicators (Arai, 1997)

– Plotted participant progress through the stages of empowerment each year

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Overview of results

• Discussion will centre around 2 participants with cerebral palsy over 4 years of participation in the FOFA Programme

• Contrast skills and competence data with observable empowerment indicators

• Provide possible explanations for the patterns observed across participants

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Participant A

0 20 40 60 80 100

T4

T3

T2

T1

Empowerment

Communcationcompetence

T1

T2

T3

T4

STAGE1

STAGE2

STAGE3

STAGE4

STAGE5

Stages of empowerment Self-rating

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Discussion Participant ACommunication

competenceSupport systems Motivation

• First time AAC user (donated device)

• Poor literacy skills

• Tablet with The GridSoftware and two switches

• Poor matching between thedevice and abilities

• Poor access to the device

• Reliant on pre-storedvocabulary

• Cannot formulate andexpress own opinions

• Unable to edit/storemessages

• Not optimal communicationcompetence

• Environmental barriers –Poor support systems(caregiver, rehab services)

• Became more empowered than immediate support system (caregiver) which led to frustration andhelplessness

• Saw regression to previous stages of empowerment development

• Internal locus of control• Motivated to communicate• Could not mobilize his external environment to meet his needs

• Poor communication confidence mainly because of poor sense of achievement. Maybe dueto poor match between his skills and the AAC device provided

• Resilience was effected negatively by his inability to communicate effectively

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Participant B

0 20 40 60 80 100

T4

T3

T2

T1

Empowerment

CommunicationCompetence

T1

T2

T3

T4

STAGE1

STAGE2

STAGE3

STAGE4

STAGE5

Stages of empowerment Self-rating

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Discussion Participant BCommunication

competenceSupport systems Motivation

• New AAC user

• Notebook with The Grid software

• Linguistic and operational communication competence (Light, 2003)

• Personal control and problem solving

• Exposure to new environments

• Strategic and social competence

• Little support

• Internal locus of control

• Rely on own problem-solving and decision making skills

• Build up a support network in his new context

• Taking on the role of ownsupporter

• Internal locus of control• Social standing in his community

• Communication competence allowed him to become a prominent in his community, leading projects

• Confidence and self-esteem grew with communicationcompetence

• Resilience linked strongly to good problem-solving skills

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Conclusion

– Progress through stages at their own pace

– Achieving a certain level of empowerment does not mean a person can’t relapse to a lower stage

• Development of empowerment ishierarchical

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• No empowerment goals without communication competence

• Other indicators maximising empowerment

• Additional research to further understand the interplay between impacting factors on development of empowerment

supportive environment

role models and social comparisons

motivation, source of control, attitudes, confidence and resilience

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Kitty Uys kitty.uys@up.ac.zaKarin van Niekerk

karin.vanniekerk@up.ac.za

Tel: 012 420 2001

Thank you to all the participants from whom we have learnt so much

FOFA Memories DVD and Presentation availablewww.caac.up.ac.za