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When I die...: The challenges and triumphs of assisting a client with a progressive neurological condition to access AAC in the last three years of her life

Session 
3.6b
Clinical
  • Helen Paterson
Summary

This paper tells the story of the last 3 years of the life of an individual, Client J, who had Friedrich’s Ataxia, and the challenges and triumphs experienced in working with her to achieve her goals of accessing a means of communication, environmental controls, and her computer. The challenges presented were many, including her progressively worsening physical condition and related access difficulties, the environment she lived in – a nursing home with a high turnover of carers – and the complex systems she required to communicate and their technological demands.

Despite these challenges, Client J maintained her motivation and determination to express herself, assert her rights and to continue to live life to the full as much as she could, including planning her own funeral via her computer and a blink switch.

This paper will describe how Client J achieved her goals, what we as a team learnt from her, and the tools and techniques used to assist in this, including low and high-tech AAC techniques, training with carers and family, technological support, funding applications to the PCT, and a whole lot of of multidisciplinary teamwork!

Level of Session 
1
Age Group 
Adult
Interest 
Anyone