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Confederación Coordinadora Estatal de Minusválidos Fisicos de Espana (COCEMFE)..
Madrid, Spain.
Javier Romanach.
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This publication is dealing with the report of Spain on experiences of user participation in R&D oriented work.

Introduction

Spain is a modern country with a developed social model that provides funds to cope with the problems derived from the needs of disabled people. The government provides two different channels to reach the disabled. On one hand it has an established method of paying pensions to disabled people who fulfill a set of requirements, that is through the INSS (Instituto Nacional de la Seguridad Social).
On the other hand, national and local governments use disabled NGOs to channel funds that come from the national budget and are supposed to reach disabled people. These funds are usually oriented to tasks such as home help, escorting, buying technical aids, day and rehabilitation centres, etc.

Spanish disabilities NGOs world is rather complex and unstructured, but at the same time rather developed. There is a single committee that deals with the government, that is CERMI (Consejo Estatal de Representación de Minusválidos). CERMI is the head umbrella organization and has representatives from different disabilities: blind deaf, physical and psychical. Most Spanish disabled organizations are rund by disabled people, generating a better functioning schema. All these organizations participate in a different degree in several activities all over the country, representing their affiliate's interests and fighting for a full social integration. Rpresentatives of many associations participate in several forums in order to influence in social evolution. The most common activity is attendance to meetings and social events, although many are starting to go one step further an take active policies that ensure a shorter term goal achievement. All user organizations have recently realized that it is important to participate directly in the R&>D process and try to influence the process in the best way they can. They are actively trying to be present in European projects of the programs HORIZON and TIDE; and the national program PITER.

User participation has been done mainly on a voluntary basis. There is no formal structure for user participation, and every company or centre that starts a new project has to go through the process of locating a user organization willing to provide a fairly well prepared user (which is not an obvious task). It is true that everyone prefers a formal user association representative than a single non-associated user, even if the latter is better prepared. Sometimes, user participation is granted through people in the staff of the association. This staff member is not always handicapped itself and has usually no choice but to assist to the meetings. There's also no formal established way to find out who's doing what in user participation through the country, not even within individual associations.

Not many different users are involved in user participation in R&D projects, and therefore most of them form a closed circle to which everybody addressed their calls, leading to a blocking situation. User political representatives have a rough time trying to find prepared users for user participation, and on the other hand, have very little to offer, as no money or continuous work is granted.

PDF-Download of Spanish Report (252KB).

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