Experiences of User Involvement in Development and Services Concerning IT based AAC Aids
Mats Lundälv
DART, Sahlgrenska University Hospital, Bracke Ostergard, Box 21062, S-418 04 Goteborg, Sweden, Tel: +46 31 502 607, fax: +46 31 53 23 07, e-mail: mats.lundalv@bracke.goteborg.se
Marica Bengtsson, user expert, IT Users, Bracke Ostergard, Goteborg, Sweden - Stefan Blom, user expert, IT Users, Bracke Ostergard, Goteborg, Sweden - Anders Gustafsson, user expert, IT Users, Bracke Ostergard, Goteborg, Sweden - Mikael Wikberg, user expert, IT Users, Bracke Ostergard, Goteborg, Sweden
1. Summary
The "B.R.U.D." project started in September 1995 at DART, the regional AAC and computer resource centre of western Sweden in Göteborg. The aim was to involve disabled users in development, adaptation, information, and education services regarding AAC and other enabling software, and to gather experiences for achieving a more long term involvement of users in this kind of work. Four users have been employed in the group during the period, three with profound motor and speech impairment. None of the users had an established work setting when the project started. The project has been supported by the Swedish Handicap Institute, the LabourMarketInstitute and three handicap organisations (DHR, HSO and RBU) in Göteborg. The project period was two years, but was later prolonged with four months.
A thorough study of the project and its effects, from both internal and external viewpoints, has been undertaken. The results confirm the assumed positive value of the availability of this kind of a continuos resource of user experts in the service provision concerning IT based aids for people with disabilities, and based on the following principles: Users supporting other users, developing their competence and serving as a complement to the established professional services in this field. The project has encountered a growing positive interest from actors in the field. All involved, including the user experts themselves, support a continuation of the activity in a similar form. However, a number of problems and difficulties have been identified, suggesting changes and further development in the organisation of future work.
Bräcke Östergård, the organisation responsible for the project, has decided to continue the activity after the ending of the project period under the name "The IT Users", and as part of a wider ranging program for user involvement in several areas.
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2. Background
The importance of involving users of enabling technology in all phases of the development and provision of these aids has gradually been focused, and eventually become established, during the last few years. It is, however, far from self evident how to make these ideas and ambitions really come true in the hectic daily activities of Research and Resource Centres, especially when it comes to more profoundly and multiply impaired users. Thus a very small number of such users are actually involved in any long term perspective. Apart from the lingering lack of awareness of needs and possibilities several other factors can be identified, such as:
- A lack of suitable organisational and work settings, flexible enough to offer realistic conditions for multiply disabled to participate and develop together with professionals in this field.
- Lacking working life experience, social networks and self confidence, and a related need for continuos educational programs, among the potential interested users.
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3. Our plan:
The plan was, in short, to gradually form a small core group of 3-5 users during the project period. Users without steady employment and with a variety of disabilities (emphasis on profound motor and speech impairment) should be recruited.
A work site should be created for the users, initially tightly linked to the DART centre, but gradually more independent. The users should be employed on a level of about 50%, and the Labour Market Institute took on the responsibility to provide the necessary personally adapted equipment. Good opportunities for continuos competence acquisition should be achieved by involving the users in current development work as a reference group and "test pilots".
Other important tasks for the project group included the establishment of a wider contact network, and to eventually take part in information, education and support services for users and supporting persons.
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4. What we did:
4.1 The organisation.
A Reference Group was established to ensure the involvement and influence of the participating partners - the LabourMarketInstitute (AMI) and three handicap organisations (DHR, HSO and RBU). Meetings were held every second month.
The core User Group of four was in place after the first year. A co-ordinator was employed on about a 50% basis during the whole project period. Unfortunately we had two shifts in this position during the project.
The Work Site, initially set up at DART , was after six months moved to Dalheimers Hus, the house where most of the handicap organisations of Göteborg have their offices and activities located. This location was in several ways positive as it offered good opportunities for co-operation.
The adapted equipment was supplied as promised by AMI, but we had quite some problems from time to time with slow delivery.
4.2 The Activities
• Software testing and development work has included:
- Testing and evaluation of specialised SAW (Switch Access to Windows) set-ups for a range of software including: MS Word and Works, NetScape Navigator, KidPix, a number of educational software packages, and a shareware game package.
Figure 1. Alternative Access software utilised by the Users
- Design and production of new set-ups with SAW and WiViK for Blissymbol users.
Figure 2. Blissymbol software
- The BlissWrite / BlissInternet software from Canada has been basically adapted for Swedish use.
- Testing and evaluation of games and leisure time software from the viewpoint of disabled users in co-operation with a project at DART.
• In service education:
- Internal education in the use of standard software (like Windows 3 and 95, MS Office, MS Publisher, NetScape, Internet Explorer and other Internet software, graphic and multimedia packages etc.), special needs software (like SAW, WiViK, Prophet, WordAid, Abbrev, SoundsWrite, Taledit, WinText (text telephone program), Comspec-prototypes, BlissPerfect, BlissProcessor, O&W-Bliss, Multimedia Plocka etc.).
Figure 3. Software to support writing
- Participation in a range of local, regional and national courses, seminars, and conferences.
• Information, courses, networking:
- The users have actively participated in information activities and courses concerning AAC and Alternative Access etc., which were arranged by DART, the Knowledge Centre for Special Education, SIH Teaching Material, Special Teacher Education at the Gothenburg University, Activity Centre at Dalheimers Hus, The Peoples University and others. During the later part of the project the User Group arranged courses for users together with user organisations like "the LaSSe Co-operative", "Gothenburg Independent Living", RBU, DHR, HSO and others.
- Two school classes for special needs students were repeatedly visited and supported.
- Information material has been produced, including folders, PowerPoint presentations, exhibition screens etc.
- During the second year a Web site was established and maintained.
- A wide range of formal and informal contacts with users, their organisations, institutions, companies and many others.
Figure 4. Blissymbol message from the B.R.U.D. Project Web-site
• Evaluation, analysis, and planning for the future:
- The project has been thoroughly evaluated by a researcher, mainly by the means of interviews with the users and other involved persons within and in the surroundings of the project.
- A survey of external conditions for a continuation of activities in the spirit of the project was committed by a consultant, who was also employed as work co-ordinator during the last months of the project.
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5. The Results:
• The experiences from, and evaluation of, the project has confirmed the high value of an established resource of competent disabled users in the service provision concerning IT based AAC and Alternative Access systems. It has been demonstrated that a User Group of this kind can be both an additional resource (increasingly needed, and complimentary to the always insufficient public professional ones) and, more important, will emphasise the importance of a constant representation of Consumer perspectives in these activities.
• The evaluation shows that all involved parties want a long term continuation of the project activities. However it is also evident that a successful implementation of the project goals for user involvement was not a straight-forward task. A long term commitment and stable organisation is required for user involvement to develop into real user influence. The general goals also need to be carefully mapped to realistic social, educational and professional plans for each individual. These conditions could not be fully provided within the project framework.
• It was a good approach to build competence mainly through practical work with testing and evaluation of software, and eventually development of adaptations etc. This resulted in a practically useful output and knowledge that could gradually be applied in information and education services. The majority of our users appreciate and want more of these socially interactive activities - rather than spending too much time in front of the computer screen.
• Finally: A lot of valuable experience has been generated, which will hopefully be of direct use for future work in similar spirit, and in particular for "IT-brukarna" (the IT Users) at Bräcke Östergård, who represent the direct continuation of the efforts of this project.
Participants in the B.R.U.D. Project 1995 - 1997:
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