EUROPEAN COMMISSION - DGXIII

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EMPOWERING USERS THROUGH ASSISTIVE TECHNOLOGY

Empowering Users through Assistive Technology

Short description

This deliverable (D01.1) presents the Final Report of the EUSTAT project, whose mission was to develop educational material for end-users of Assistive Technology (AT), as well as to provide guidelines and methodologies for those – whether peers of professionals – who carry out educational initiatives aimed at promoting their empowerment, helping them to make informed, appropriate and responsible choices of AT.

This document is divided into four Chapters.

Chapter 1 (Setting the Scene) describes the reasons why the Eustat study was launched. Since end-users should be regarded as main protagonists and decision makers of AT choices, it should be possible for them to avail the educational possibilities to become informed, demanding and responsible consumers of AT.

Chapter 2 (Approach) recalls the objectives of the Eustat study, describes its target (primarily persons with disabilities, but also family members and personal assistants) and points out its twofold technological and social orientation. It also describes the structure of the project and the way it was carried out until achieving the planned results.

Chapter 3 (Results and Achievements) provides details of the products of the Eustat study. These consisted of four Manuals, of a number of supporting tools for awareness and dissemination of results, of an increased know-how. The most important products are the Eustat User Manual and the Eustat Guidelines, that have been published in six languages.

Chapter 4 (Conclusions and future plan) highlights the cultural contribution offered – at international level - by the Manuals, which do not only provide information, methods and guidance, but also help to spread out the concepts of people with disabilities being partner in and being actors of AT choices. This helps equal opportunities and promotes increased control by end-users over the quality of AT services and products. This chapter also synthesizes how the Eustat results are going to be exploited after the end of the project. More details on this point are offered by the Exploitation plan (Deliverable D02.7).

The term Assistive Technology (AT) encompasses all products and services able to compensate for functional limitations, facilitating independence and improving the quality of life of elderly people and people with disabilities. The key role played by AT in supporting quality of life and participation in society is widely recognized and beyond dispute nowadays.

One of today’s key issues is empowering persons with disabilities to choose an independent lifestyle, in terms of taking full control over their lives, and being informed and responsible consumers of AT and support services as required by their disabilities.

However, the choice of an assistive device may be not easy, and is often a matter that effects deeply the individual’s life. The process that leads the end-user from the identification of a personal need to the acquisition of an assistive device often involves a number of steps that may call for critical decisions to be made. Knowledge helps in tackling the various steps, which means setting goals, making decisions and planning actions, and thus is an important component of empowerment.

In all European Countries most AT products are not directly purchased by the end-user, but rather provided through a Service Delivery Systems that often takes care of their selection and (partial or total) funding. In same Countries, people with disabilities are entitled to obtain a wide range of technical aids without any budget constraints; in other Countries they can obtain just a small range of basic technical aids with little financial help. In both situations it is however clear that the European AT market is substantially driven by Service providers rather than by the end-users, the latter having sometimes small freedom of choice and very little influence on the decision process. This reflects the heritage of a medical model that is now considered inadequate for a satisfactory implementation of AT. When disabled persons directly purchase assistive devices and pay it out of their pocket, this obstacle obviously does not exist; however, the lack of knowledge and information again acts as a barrier towards their concrete possibility to choose the proper technology.

In today’s society, organisations of people with disability strongly advocate a user-centred approach, where the end-user is the main protagonist and the decision-maker in matters effecting his/her life. In this view, professional services are still recognised as being fundamentally important, but tend to be seen as options, not obliged pathways, that the community provides and the individual is free to adopt in order to help the process of rehabilitation, social integration and full participation. The most advanced professional services tend to share this view, and in these settings it is not uncommon to hear terms like partnership with end-users, as opposed to a concept of full dependence on the decisions of AT providers, which was more typical of past thinking.

Also within the EC/Dg5 Helios Programme (1988-95) and the EC/Dg13 Tide/Heart project (1993-94) several recommendations were issued around the concept that End-Users should be regarded as the main protagonists and the decision makers of such choices, even in case professional assistance is needed or required.

However, to avoid terms like decision-maker or partnership with professionals becoming empty buzzwords that lack any tangible implication, it is important that end-users be given the educational possibility to become informed, demanding and responsible consumers of AT.

This was the challenge of the EUSTAT study. By addressing such challenge, the study intended to offer a specific contribution to the empowerment of people with disabilities.

The main objective of EUSTAT was the development of Educational material for end-users, as well as Guidelines for those – whether peers of professionals - who carry out educational initiatives that facilitate empowerment of end-users, helping them to make informed, appropriate and responsible AT choices.

When we speak of end-users, we refer primarily to people with disabilities, or elderly people who have difficulties coping with the practical matters of daily life. However, sometimes the term end-users can also cover other people in the individual’s primary network like family members or helpers, whenever AT is to be used in conjunction with personal assistance or as a tool to make assistance easier. What’s important is to distinguish between end-users and other actors (AT providers, suppliers or advisers) who could also be considered "users" in a broad sense - in that they use AT as a tool for their professional activity in the field of disability – but were not the primary target of the EUSTAT study.

The methods for carrying out AT education of end-users are virtually infinite. They may vary according to the amount and extent of the knowledge to be transferred to end-users, the characteristics of the trainee population, the environmental context and so on. The guiding idea of the EUSTAT study was that each end-user should be provided with the maximum amount of sustainable and useful knowledge. This may sound sensible enough, but it raises the question as to what is "sustainable and useful" for each individual and who is to decide that. If a simple answer existed, there would be no reason for this study. In fact, there appears to be no single answer. Knowledge transmission is a process that involves a moving target, in that people change in response to knowledge: new horizons open up, new needs arise, new challenges appear. So it cannot be handled simply by providing a set of notions and information. It requires an educational approach to assist people in their changes.

This scenario called for the contribution of several competencies. In the whole, the Consortium was able to put together an interdisciplinary team with remarkable expertise in disability issues, assistive technologies and educational sciences. Its composition was strongly user-focused, including three user organisations composed of and led by disabled persons (the involved researchers being disabled themselves), two research centres with a long lasting tradition of working together with end-users, and an academic institution.

As recalled in the previous chapter, EUSTAT addressed the educational needs of end-users of AT. The primary target of the project were adult disabled persons with moderate to severe physical impairments (congenital or acquired) of any kind. Elderly with disabilities were part of this target. The educational needs of family members and primary networks stakeholders (personal assistants, friends, colleagues) were also considered, since the AT role often extends to the whole primary network around the individual.

However, although falling outside the EUSTAT scope, it is expected that the results will be useful also for rehabilitation professionals when they act as AT advisers - in that they offer a model for an empowerment approach - and for many other people involved in AT research, development and service delivery - in that they help understand the users’ attitudes towards AT and possible problems that may arise from poorly designed devices and related services.

EUSTAT had both a technological and social orientation. It stemmed from the idea that people with disabilities must be active participants in the choice of their AT, thus:

• helping equalisation of opportunities
• enhancing the effectiveness of AT, since informed and responsible choices are a key factor for the success of AT, and
• introducing direct control by end-users over the quality of AT services and products.

In order to achieve these objectives, the Eustat Consortium adopted an interdisciplinary approach. Although each workpackage was led by a responsible partner, any progress was carried out in co-operation with all other partners, each providing specific pieces of work, feedback or remarks, until reaching full consensus. Main tools for such co-operation were the e-mail exchange of draft and discussion papers, as well as live discussion and team work during the Consortium Meetings. 

The project consisted of 7 Workpackages.

WP01 (Project Management) took care of guiding and planning the whole project, of the overall management, of reporting progress to the Commission, of financial matters.

WP02 (External information and concertation activities) was concerned with all information / awareness activities and participation in Concertation Meetings and Conferences. It also took care of

• maintaining the Eustat website and the Eustat database
• designing communication material (logos, posters and leaflets)
• printing and disseminating the material produced by the project, and
• setting up a publications service at the end of the project.

WP03 (Critical factors involved in user education in relation to AT) defined the conceptual framework for the development of educational initiatives. It identified, classified and described the body of AT knowledge to be transferred to end-users, and brought to the fore all critical aspects involved. It also included a detailed literature review. WP03 resulted into the publication of the first Eustat book (same title as the workpackage).

WP04 (Collection of existing experiences and methods) carried out a comprehensive survey - by means of multilingual questionnaires and on-site visits - of existing experiences and good practices of AT education addressed at disabled and elderly people in all the EU Countries. Some leading extra-European experiences (mainly in North America) were also analysed. WP04 resulted into the publication of the second Eustat book (Programs in AT education for End-Users in Europe).

On the basis of the WP03 and WP04 findings, as well as of the direct partners’ experience, WP05 (Development of educational material for end users) worked at a Manual which should serve as basic self-training material for end-users, as well as textbook for educational initiatives addressed towards end-users. This workpackage resulted into the publication of the EUSTAT User Manual (Go for it! A Manual for Users of AT), which was also translated into the other five partners’ languages.

Likewise, WP06 (Development of Guidelines for the design of Courses aimed to empower Users in relation to Assistive Technology) developed a set of guidelines for educators and those who organise educational initiatives for end-users. As for the User Manual, the perspective was European and thus not specifically rooted in any Country. WP06 resulted into the publication of the EUSTAT Guidelines (AT Education for End-Users: Guidelines for trainers), which offer educational models and examples applicable all over Europe, although open to regional or cultural adaptations. This book was also translated into the other five partners’ languages.

In WP07 (Validation of Guidelines and Educational Material) the EUSTAT User Manual and the Eustat Guidelines (although in a draft stage at that time) were experienced and validated in three experimental sites in Italy, Belgium and France, within ongoing end-user training initiatives carried out by user Organisations. The findings of the validation exercise were instrumental to the compilation of the final version of such books. This workpackage also took care of producing the EUSTAT Video.

The project duration – initially Dec 1, 1996 to Nov. 30, 1998 - was extended twice: the first time to Jan 15,1999 (due to late notification of the starting date by the Commission, this causing the project activities to actually start on January 16, 1997); the second time to April 30, 1999, due to the Consortium’s difficulties in finalising the translations of the main Deliverables into the partner’ languages. The actual WPs timing is shown in the tables below.

The project activities actually started on January 16, 1997 with the preparation of the 1^st Consortium Meeting, held in Milano, Italy on January 19-20.

Along with defining administrative matters and management issues, the Meeting included a brainstorm session where the basic ideas for WP03 were generated, on the basis of the partners’ experiences. Also external communication issues were addressed, with a view to spread out correct and positive messages on disability and AT whenever awareness activities would take place in the course of the project. Concerning peer reviews, it was decided to aim at two high profile reviewers – one from the academic side and one from the users side - who could assist the Consortium throughout the whole project with detailed and tough reviews, so as to help achieve satisfactory quality of public deliverables.

The first WP02 task consisted of creating a suitable logo and a leaflet to be widely disseminated in 6 languages. The issue of translations – which reappeared several times in the course of the project – soon brought to the fore the difficulties related with the adaptation of many concepts in the various languages. The leaflet was successfully completed at mid March in all languages and then widely distributed throughout Europe and U.S. In the meanwhile, the first pages of the multilingual Eustat website were designed and put online; moreover, data collection started for the Eustat database.

WP03 also started soon after the meeting, and was able to produce a literature review in draft two months later. This was circulated to all partners for verification and completion until reaching its final form (D03.1 – submitted at mid April). At mid May the first draft of deliverable D03.2 (Analysis of Critical Factors) was circulated to all partners for comments and contributions. An extended e-mail discussion took place, mainly concerning the choice of the conceptual models that could better serve the purposes of the Eustat studies.

The 2^nd Consortium meeting, held in Bruxelles, Belgium on June 12-14, was mainly devoted to discussing such framework, as well as to planning the inventory of existing experiences (a draft D04.1 had been compiled in the meanwhile). Just before, a Concertation Meeting of the Telematic Application Programme had taken place in Bruxelles, where the Commission had offered the possibility to present Eustat to the public and to start links with other TAP projects in the area of education and user empowerment.

Ways to sort out the complexity of the Critical Factors analysis were found: on this basis, deliverable D03.2 was restructured, further input was collected through interviews to a sample of end-users recruited by users-organisation in each partner’s Country, until the document was redrafted and sent out for peer review at mid July. The peer reviewers’ input was quite detailed, calling for a further e-mail discussion round within the Consortium. After several redrafting, the document was finalised and submitted on September 30. In the meantime, decision had been taken concerning the publications format; a first release of the database had been produced (D02.2); so it was possible to proceed soon with printing and dissemination of the book. Based on this work, at the AAATE 97 Conference in Thessaloniki (28/9-1/10) Eustat played an active role, by delivering a scientific paper and collaborating in two workshops on AT education and User Empowerment.

In parallel, WP04 went on designing the questionnaire for the analysis of existing experiences and established a data processing methodology. A draft D04.1 was approved in the 2^nd Consortium meeting, sent out for peer review, revised according the peer reviewers’ recommendations, translated into all the partners’ languages and finally submitted at mid July. The inventory was carried out in the period July – November. 687 questionnaires were sent out throughout the world; from the 163 respondents it was possible to identify 87 educational programs to be analysed. Six on-site visits were also carried out in October to the most relevant programs in order to get a deeper insight. Finally, a draft D04.2 was circulated to all partners and peer reviewers within November for a discussion round.

One session of the 2^nd Consortium meeting was devoted to the generation of ideas for the educational material for end-users (WP05). At end September a first outline was ready (D05.1), and the real development started, with the help of the WP03 findings and several e-mail discussion rounds within the Consortium.

In the first Annual Review (Bruxelles, October 22) a recommendation was issued to anticipate the definition of the exploitation plan. Then the 2^nd TAP Concertation meeting (Bruxelles, December 4-5) provided the opportunity for starting concrete cooperation with the projects Impact, Telemate and Fortune.

The 3^rd Consortium Meeting (Cascais, Portugal, 11-13 December) was another project milestone. By working in both plenary sessions and parallel restricted groups, decisions were taken on the contents of the following deliverables:

• the Inventory (D04.2) and the related hypertextual version (D04.3)
• the database (D02.3), which had gone through a verification procedure by means of mailing verification forms to all addresses included
• the first draft of the User Manual (D05.2) and the first outline of the Guidelines (D06.1).

Such deliverables were finalised later and submitted as shown in the above table. In the meantime, following to the Annual Review’s recommendations, an exploitation strategy was agreed upon. After several refinements, the exploitation plan was submitted afterwards at mid May 1998 in draft (D02.4), and at the end of the project in its final version (D02.7).

The first months of 1998 were mainly devoted to the development of the User Manual (WP05) and the Guidelines (WP06), in order to achieve a sufficiently consistent draft before the Validation exercise. The 4^th Consortium Meeting (Snekkersten, Denmark 26-28/4) was the place where the structure of such documents took concrete shape, and the validation sites were operationally planned. The drafts were ready at mid May. This allowed PRIS, ANLH and GIHP to perform a preliminary translation of the User Manual so as to maximise the number of people (trainees and trainers) who could provide their input. The Guidelines were not translated, it being possible to find suitable validators who could directly read them in English. The validation plan (D07.1) was submitted at the beginning of June, and included the questionnaires and the methodology of analysis.

The French validation site took place in Bordeaux on June 5-12-19-26, in a Course organised on-purpose by GIHP with 8 trainers. Participants were 12 physically (motor and blind) impaired people. The Belgian validation site took place on June 17-18-19, within the framework of an ANLH educational program. The AT module was held three times, each in a different region (Bruxelles, Wallonie and Flanders) with 3 trainers and 22 participants (12 physically impaired persons and 10 personal assistants). The Italian validation site took place in Belluno, from July 27 to August 8, with 53 trainees (26 physically disabled persons and 27 personal assistants) and 10 trainers, within the PRIS Independent Living Residential Courses Programme. The structure of this Course followed a consolidated 14-years tradition, so it was possible to make comparisons with the findings of the EUSTAT Guidelines. All trainees and trainers of the validation sites (155 in the whole) were provided with a copy of the draft User Manual in their language, and requested to send back their filled-in questionnaire within September. For the Guidelines, 20 respondents were selected.

Due to the difficulties in getting back all questionnaires, the Validation report (D07.2) was actually delivered on mid January, 1999. However, after September the main headlines of the validators’ remarks were already known from the first batch of questionnaires, thus making it possible to proceed with gradual improvements of both the User Manual and the Guidelines. The peer reviewers’ input (carried out on the basis of revised drafts) was substantial at this stage, especially for the Guidelines.

Over the summer Eustat participated with a paper and a booth at the TIDE Conference in Helsinki (25-26 June). The second Annual Review took place in Bruxelles on October 24.

In the last Consortium meeting (Bordeaux, 7-9 November) all decisions were taken concerning the finalisation of the deliverables due in the last stage of the project. It appeared impossible to conclude the project within January 15, 1999 as originally planned, due to the huge work still required for a) finalising the contents of the User Manual and Guidelines, b) compiling the national translations, c) editing, desktop publishing, printing and sending out, and d) finding a long term solution for distribution. An extension of the contract was therefore requested (and approved) to April 30, 1999.

In general terms the work has progressed efficiently and according to deadlines, with minor deviations. The Consortium proved to own the needed mix of competence and expertise to cope with the aims of the project. Some difficulties related to contents development were encountered at various stages of the project, as described in the Annual Review reports, but the Consortium was always able to sort out with satisfactory solutions. Financial difficulties arose due to the Commission’s delay in providing the 2^nd reimbursement. A major difficulty appeared at the end of the project, when working at the national translation of the User Manual and the Guidelines. This task - that required cultural adaptations and thus people with specific expertise in the field - was probably underestimated in the Project Programme, so it called for additional resources to be put by various partners. However, also this problem was overcome and the Consortium was able to achieve successfully all objectives.

The main results of the EUSTAT study consist of the educational material that has been developed and published for the education of End-Users of AT. This is contained in a set of four books.

Two of them are intended for a large audience (people with disabilities and educators), and thus have been produced in English plus the other five partners’ languages (Danish, Dutch, French, Italian and Portuguese).

The other two books (produced only in English language at an earlier stage of the project) are mainly intended as background material for the training of educators; thus they are mainly addressed to those (researchers; organisers of educational initiatives etc.) who wish a deeper insight in the subject.

The Manual for End-Users

This book is a basic educational package to be used directly by end-users of AT (mainly people with disabilities, but also their family members and their personal assistant) or as a textbook for educational initiatives. It is written in plain, easy-to-understand language.

It is divided into eight chapters that progressively lead the reader from a basic understanding of AT, how to choose it and how to seek advice, to a deeper insight into the implications of AT at both individual and social level. In this way, the manual is helpful to novice and expert users alike. It can also assist readers in their personal growth towards more in-depth knowledge, which can be used not only for improving personal autonomy, but also for helping others by acting as peer counsellors.

After some introductory considerations, three chapters (Be prepared for the process of getting AT; Choosing and getting AT; and The service delivery system) offer methods for analysing one’s own daily life activities in order to identify areas where AT can be useful; they also highlight aspects the user should be aware of when seeking external advice or accessing a public service delivery system. Concrete examples are offered by the chapter People and AT: some stories of success, that illustrate how AT could solve problems in real life for five persons with disabilities. A comprehensive description follows (Knowing AT) of existing AT products and services, together with many practical examples and pictures.

Chapter Information resources and personal advice on AT describes information tools, information sites, and other possible sources of advice that can be sought when choosing AT. In the chapter For you who want to know more the focus shifts from an individual perspective to a social one, so as to understand the impact of AT on society, to communicate better with professionals and other stakeholders, and to be ready to keep pace with future developments.

The final chapter (The next challenge: from user to peer counsellor) offers ideas, methods and tips for those expert users who wish to make their experience available to novice users.

In the whole, the Manual includes:

• material than can be used as a tool for self-instruction before selecting an assistive device, on one’s own or with the support of professionals
• material that can be used by teachers in educational courses for end users;
• material that offers knowledge on information systems in the AT field, where the end-users can search for updated information on AT products or services available on the market;
• material that aims to increase the end-user’s general and specific knowledge on AT, and
• material that improves the skills of end-users as prospective peer-counsellors to other people with disabilities, able to promote positive and assertive attitudes towards AT.

Before reaching its final version (D05.4), the Manual was developed through three subsequent drafts, respectively D05.1 (outline), D05.2 (first draft) and D05.3 (second draft), the latter being experimented in the validation sites. The development was carried out by the partner DC in close cooperation with all other partners, each of them providing input in terms of either pieces of texts or just feedback. A number of informal "face validity" tests (people with disabilities reading the Manual and offering their first-glance view) were carried out at different stages, before undertaking the formal validation (workpackage WP07) and going through the peer review.

A preliminary translation of D05.3 into Dutch, French and Italian was made in the Validation Sites in order to extend the number of people (155 in the whole) who could read it and express their judgment by means of a questionnaire. Based on the findings of the validation exercise and of the peer review, the final version was worked out and provided to all partners for the final translations into the various languages. At the same time a suitable graphical layout with drawings, cartoons and photos was designed in view of a satisfactory user-friendliness.

The translations showed a quite difficult task, due to both the size of the document and its contents. A lot of concepts dealt with in the book needed cross-cultural clarifications within the Consortium, as well as consultations with experts from each Country. Some national adaptations were also needed, such as the titles, the appendixes related to information sources, etc. Care was put in making the presentation user friendly in each language as well as in adopting a consistent terminology.

The Manual for Educators

This book - also referred to as the EUSTAT Guidelines - is intended for people who organise and carry out educational programmes for end-users of AT. These may be user organisations, self-help groups, rehabilitation or social services, mixed user and professional organisations, or AT providers.

The book helps reflect about establishing priorities, focusing goals, and clarifying the role of AT in the users’ empowerment process. It also offers methods and tools for designing and implementing educational initiatives.

This book is divided into six chapters.

Chapter One (Guidelines in brief) clarifies the objectives of this book and the intended readership. It also offers a general overview of the concepts explored in the other chapters, so it can be used as a checklist for organisers of educational initiatives.

Chapter Two (Basic concepts) clarifies some keywords related to disability and AT that educators should know before undertaking any educational initiative.

Chapter Three (Setting objectives and adopting methods) helps organisers of educational programmes to set objectives, label them according to a consistent terminology, and take decisions about priorities and critical factors.

Chapter Four (Organising educational initiatives) addresses the organisation of educational initiatives, including the design process, the selection of topics to cover, pedagogical methods and styles, and practicalities.

Chapter Five (Gearing to the audience) discusses factors to consider so as to meet the learning pace of trainees and ensure that the knowledge delivered will be useful in their daily life context.

Finally, chapter Six (Case studies) offers three case studies that may be useful as concrete examples of educational activities for end-users. These are based on the experiences carried out by three EUSTAT partners in Belgium, France and Italy in 1998, which provided the context for the validation sites.

The development of this Manual was the mission of Workpackage WP06. Before reaching its final version (D06.3), the Manual was developed through two subsequent drafts, respectively D06.1 (outline) and D06.2 (first draft), the latter being experimented in the validation sites. The development was carried out mainly at SIVA, in close co-operation with all partners and based upon the findings of workpackages WP03 (Identification of critical factors) and WP04 (Inventory of existing experiences). Whereas WP03 identified and classified the issues involved in the end-users education process, and WP04 offered an overview of real-life experience, this workpackage looked for possible responses to such issues, and developed material that could serve as guidance for educators and organisers of educational initiatives.

The Manual was not translated for the validation exercise, since it was possible to rely on a number of persons (20 in the whole) who could read it directly in English, and offer their judgment by means of a questionnaire. Based on the findings of the validation exercise and especially of the peer review (which was particularly useful at this stage), the final version was worked out, submitted for a second peer-review, and finally provided to all partners for the translation into the various languages.

As for the User Manual, also the Guidelines translation was also a difficult task. A lot of keywords used in the Guidelines often showed different shades of meaning in the various Countries, thus requiring cross-cultural clarifications within the Consortium, as well as consultations with experts from each Country. The Consortium believes that the great effort spent in clarifying concepts have greatly increased the transnational validity of the Guidelines. Therefore it is foreseen that the Guidelines - as the User Manual - will be usable and probably useful also in many other Countries.

The term critical factors refers to aspects that deserve careful consideration when transferring knowledge to End-Users in view of their empowerment.

This Report (embodied in deliverable D03.2) identifies, describes and analyses such critical factors, giving rise to a conceptual framework for the development of educational initiatives.

The main concern of this study is the process that leads from expression of the need to the choice of AT. Chapter 1 introduces the philosophy of the EUSTAT project , clarifies some basic concepts and describes the contents and methodology adopted. Chapter Two deals with the relationship between AT and end-users, and describes knowledge transfer as a key factor for bridging the gap. In Chapter Three, a systematic classification of critical factors is given. This is based on a model of the educational process that embraces the sequence of logical steps through which a body of knowledge takes shape in the mind of someone organising an educational initiative, is delivered to end-users, and gradually brings about their empowerment. Chapter Four lists supporting literature, and also includes a comprehensive review of 28 selected handbooks on AT that may be useful material for end-user education.

This book (embodied in deliverable D04.2) is the result of a wide international survey aimed at identifying, classifying and describing existing examples of educational programs in AT for persons with disabilities and the elderly.

The survey was carried out at international level mainly by means of questionnaires. 687 questionnaires were disseminated throughout the world. 163 organisations responded and allowed to identify, analyse and describe 87 educational programmes concerned with AT. Six on-site visits were also made in order to collect further information and insight about a number of outstanding programs that adopt different approaches.

Such survey was not intended as a exhaustive inventory covering the whole world, nor as a comparative evaluation of programs on the basis of pre-defined criteria of good practice. The purpose was to identify a significant sample of experiences that could provide the basis for understanding the current approaches, the methods adopted, the possible trends. Such objective was fully achieved, and provided a solid ground for the development of the User Manual and the Guidelines.

This book is quite extended (232 pages) and is divided into two parts:

• Part One is devoted to analysis of existing educational programs in AT. It contains a detailed section-by-section discussion of the data obtained from the survey, description of seven programs visited on-site, and 87 programs analysed on the basis of the questionnaires.
• Part Two presents the obtained data in both numerical and graphical form.

A hypertextual version of Part One (D04.3) has been also compiled and published on the EUSTAT website. It allows efficient navigation through the 87 educational programs that have been analysed; it is also intended as a tool to promote mutual exchange of experience, as well as networking among those who organise educational programmes in the field.

In the course of the project a number of supporting tools were also produced for facilitating awareness on the subject, dissemination of the reports, and exploitation of know-how. This consisted mainly of a database of selected addressed, a presentation leaflet of the EUSTAT project which was published in 6 languages at the beginning of the project, a brochure advertising the EUSTAT publications, a Internet website, and a video documentary.

Awareness on the subject was promoted in a first stage by widely disseminating the EUSTAT presentation leaflet, mainly all over Europe and in North America; afterwards, an inventory of existing experiences allowed direct contact - by mailing and questionnaires - with organisations that actually carry out educational activities for end-users. The database was instrumental to keeping contacts with these organisations during the course of the project.

Whereas some such tools were instrumental to the project activities, and thus were temporary, three "tools" have been prepared that will be operational also after the project is finished, so as to proceed with dissemination of results and awareness. These are a) a publications service, b) the Eustat web site, and c) the Eustat Video documentary.

The peculiar target of the EUSTAT books (chiefly individuals with disabilities, users organisations, rehabilitation professionals, educators) claimed for a free or lowest-cost distribution policy. To this end, the Eustat Consortium established three conditions:

• the books should be freely donwloadable from the Internet
• the printed versions, in any language, should be available at a low price to any person requiring them from all over the world
• reprints of national versions should be possible – in collaboration with local sponsors - in order to maximize dissemination (possibly free of charge) to all people interested.

The Consortium could not find any commercial publisher that would satisfactory fulfil all the above conditions. Therefore a publication service - operating on a non-profit basis - was set-up on purpose by one EUSTAT partner with the agreement of the whole Consortium. Owing to such service, all four books are available on request at prices that cover the pure advertising, production, handling and shipping costs (for details: see the the exploitation plan or the EUSTAT brochure). The service will also take care of

• actively advertising the books
• reprinting them as they are sold out, and
• maintaining their electronic version on the website.

The printing technique consists of high quality photocopying of the DTP-edited originals, the bookbinding being made through colour covers that have been pre-printed with the EUSTAT logos.

The electronic version, available for free download, has been compiled in two formats:

• PDF (facsimile of the printed version) and
• HTML-Text-only format (for optimising readability for blind or sight impaired readers).

Permission will be granted to other external Organisations who are willing to translate any of the books into other languages for publishing in their Country, according to the conditions specified in the exploitation plan. As such national versions are compiled, it will be again the publication service’ task to publish them on the website.

The three main objectives of the multilingual EUSTAT website are:

• presenting the project and spreading awareness on the role of AT users education
• providing facilities for browsing the EUSTAT manuals, downloading their electronic version or ordering their printed version
• presenting the most relevant experiences of users education, so as to facilitate contact and networking among them.

The structure of the site is shown in the diagram below and further detailed in the exploitation plan. The site will be regularly maintained by the SIVA Documentation Service team, it being part of the larger SIVA website (www.siva.it).

The subpage "more details" will also include this final report (as this will be approved by the Commission), and a video-clip extracted from the Video Documentary. Other national pages may be added in the future as the translations of the Manuals into other languages are compiled by organisations external to the EUSTAT Consortium.

According to the Project Programme, the Video (D07.3) was initially intended as just an overview of the validation sites, helping to better understand the impact of the validation exercise on the participating organisations.

However, when running the validation sites, the richness and liveliness of the educational experiences that took place suggested that the video could offer a valuable opportunity for spreading awareness on:

• the end-user’s role as main actor and protagonist of AT choices, and
• the importance of carrying our AT education in a proper way.

Therefore the concept was extended by designing the video in such a way:

• to increase awareness on the AT role
• to offer an overview of the EUSTAT project in the whole
• to show the importance of AT education through live witnesses of participants at the validation sites
• to inform that educational initiatives are possible and exist, and
• to advertise the EUSTAT educational material.

It was also decided that the video would be edited at a professional standard, even if requiring additional resources to be put by the responsible partner.

The structure of the video includes:

• a short presentation of the EUSTAT study;
• an overview of the role of assistive technology and personal assistance
• interviews to trainees and trainers in the three validation sites, highlighting the importance of education of end-users
• a presentation of the educational material produced by the study.

The Video is in English and lasts 12 minutes. Simultaneous translation is included for interviewed people who speak in their mother-language. A summary video-clip is being extracted from the Video Documentary for publication on the Website.

The heritage acquired from taking part in the project - by jointly working at the EUSTAT developments and capitalising on the experience of each other - has resulted for each partner into an increased know-how of AT education methods. This is being exploited in the educational programs they will regularly carry out for either end-users or professionals. Some such programs are completely new, some others reflect past experience but have been revised on the basis of the EUSTAT findings. They are described in the following.

For the purpose of the Validation sites, three educational programs for end-users have been carried out respectively in Italy (by PRIS), France (by GIHP) and Belgium (by ANLH). These are described in Chapter 6 of the EUSTAT Guidelines, they being considered as examples of good practice in AT education of end-users. Whereas the PRIS program was based on previous experiences – and thus allowed to compare the EUSTAT findings with previous practice – the GIHP and ANLH programs were brand new, and represented an important novelty in their Countries. Based on the EUSTAT Guidelines and User Manual, all these users-organisations will go on carrying out similar courses for people with disabilities, family members and personal assistants also in 1999 and in future years. In addition to that, a new course has been planned by PRIS for trainers: it is addressed to people with disabilities who wish to serve as AT educators in educational initiatives for end-users.

Also SIVA, DC and CAPS introduced new educational programs in their regular activities, users empowerment being part of their mission.

• a new module (about 8 hours, the EUSTAT Guidelines being the textbook) called "AT education of end-users" within the postgraduate Course for the University Assistive Technology Certificate run in cooperation with the Milano Catholic University. Through this module, rehabilitation professionals - who are the primary target of such course - will be trained to bettter act as AT educators of end-user within the rehabilitation practice.
• A short course on AT for adults with physical disabilities (about 8 – 10 hours divided into a series of seminars, the EUSTAT User Manual being the textbook), aimed at providing a basic overview and understanding of AT.

DC introduced the EUSTAT Guidelines and User Manual as textbooks or reference material in the Seminars it regularly holds throughout Denmark, either addressed towards professionals or end-users. Among other things, the Eustat books already revealed their value as basis for mutual understanding between users and professionals.

As academic institution, CAPS’s educational activities are mainly addressed at professionals and students. However, the EUSTAT findings revealed their usefulness also in this educational context, so they are being introduced in all activities related to disabilities. The coverage is not limited to Portugal, but also extends to some Countries of Latin America (Brazil, Colombia, Ecuador) due to existing trans-national agreements.

Finally, some joint international activities have been set-up by the EUSTAT Consortium before its closure, and placed under the auspices of AAATE (Association for the Advancement of Assistive Technology in Europe):

• an international SIG (Special Interest Group) on Education and Information, and
• an international Instructional Course on End-Users AT Education, in connection with the AAATE 99 Conference (November 99) in Dusseldorf, Germany.

By making available to AT end-users and their trainers a comprehensive set of educational material designed to be used all over Europe - and possibly world-wide -, the EUSTAT books respond to a need that was unmet so far in many Countries.

Whereas plenty of educational material has been produced in recent years for both clinical and technical professionals, for academic, pre-service or in-service training, before EUSTAT little or no material had been produced with an international perspective having specifically in mind the educational needs of those - the people with disabilities - who daily use AT. A reason for that can be seen in the fact that traditional approaches towards AT tended to regard end-users as passive recipient of products and services, mainly provided by financing bodies upon prescription by clinical professional.

Conversely, current approaches are inclined to look at end-users as AT consumers, thus main actors of any choice that has impact on their lives. According to this view, the relationship between end-users and professionals should be a partnership, where the former bring their expertise of living with a disability, and the latter offer their suggestions as advisers or expert guides. Such partnership approach – which highlights the importance to providing end-users with appropriate knowledge and education - guided the development of the EUSTAT books.

The potential readership of the Users Manual for is quite large, it being addressed towards any person experiencing disabilities due to physical impairment.

Conversely, the intended readership of the Guidelines is restricted to educators or organisations that carry out education of AT end users; however, this is also a remarkably large audience that includes users organisations, professional organisations working in the disability field, rehabilitation professionals and peer counsellors.

Part of this audience – mainly the organisers of educational initiatives – will be also interested in the background manuals. As a matter of fact, before the publication of the User Manual and of the Guidelines the first batch (500 copies) of these background manuals had already been sold out to users or professional organisations that are active in this area in various Countries of Europe, so a reprint was necessary.

Due to the above considerations, the dissemination of the EUSTAT books will be a major objective of each partner even after the end of the project. First, having adopted them as textbooks in their regular educational initiatives will ensure outreach to all trainees. Secondly, besides to the advertisement activities already carried out before the project closure, each partner will pursue further dissemination initiatives at national level. This will mainly consist in finding publishers and sponsors able to ensure a wide-scale outreach.

For instance, at the time of submission of this report, ANLH was assigned by the Gouvernement de la Region Wallonne the task to promote and disseminate the User Manual throughout Belgium. Such Regional Government will financially support the printing and the distribution free-of-charge of 10.000 copies in French. A similar agreement had been finalised in Portugal between CAPS and SNR (Secretariado Nacional para a Reabilitação e Integração das Pessoas com Deficiência – the State Agency responsible for disability issues) for distribution free-of-charge of the User Manual throughout Portugal and other Portuguese-speaking Countries.

Contacts have been taken also with organisations external to the Eustat Consortium, in view of promoting translation and publication of the User Manual and the Guidelines in other Countries. Such negotiations take long, so no formal agreement had been finalised at the time of submission of this report, although discussion was in progress with Spain (Imserso/Ceapat), Germany (various organisations) and Bulgaria (the local branch of the United Nations Development Program). However, the publication service will take care of proceeding with – and possibly expanding - such contacts.

In conclusion, the Consortium believes that these books not only provide information, methods and guidance, but also contribute to spread out the concepts of being partner in and being actors of AT choices. In this way they offer a cultural contribution to society by helping equal opportunities and promoting increased control by end-users over the quality of AT services and products. This was a major objective of the Project Programme.

Further information on the TELEMATICS APPLICATIONS Programme:
You can obtain more information on the projects of the TELEMATICS APPLICATIONS Programme from:
European Commission, DG XIII, C/1
TELEMATIC APPLICATIONS Programme Information desk
Rue de la Loi 200 - BU 29 - 04/05
B - 1049 Brussels
Fax: +32 2 295 23 54
E-mail: telematics@dg13.cec.be

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