Last voices:An Exploration of the nature of Assistive Technology Interventions for people with Motor Neurone Disease

Reading University
Reading, United Kingdom
2004

Motor Neurone Disease (MND) is a steadily progressive disease affecting an estimated 5000 people in the UK, for whom assistive technology (AT), in the form of computer-based solutions and dedicated communication devices offers opportunities to retain their independence and meet their communicative needs.

This study documents and critically assesses the processes of referral, assessment and training in the use of computer-based assistive technology of clients with MND undertaken by Abilitynet, a specialist UK-based charity. A mixed method approach was used to illuminate a 'focal case' of an individual with MND who became a client of Abilitynet and the subject of an AT intervention. In addition to field observations, documentary analysis, and interviews with the individual client, interviews were conducted with individuals involved in the focal case and with experience in similar cases. Analysis across these sources allowed themes to be identified across a range of data.

The main findings of the study include recognition that the nature of MND and the needs of the clients should make rapid response to the needs of clients with MND a priority. Effective inter-agency liaison around cases is essential, particularly given the increasing convergence between computer-based solutions and dedicated communication aids. The role of Assistive Technology itself has been well theorised, and established frameworks exist for the evaluation of interventions and technical solutions but the role of an assessor has been less well defined.

The range of solutions is reviewed, but assessors characterise their role not solely in terms of identifying the most appropriate enabling technologies, but of exploration, with the client, of how best their individual needs can be met and how these might change. They cite the importance of a process of apprenticeship within the organisation in developing their capabilities and repertoire. Recommendations are made as to how organisations like Abilitynet can support their assessors in providing the best possible care for clients with MND.