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
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