Association of the Forum of Disabled of Slovenia

by Rafael Zupanèiè

On reading the Government Country Report on compliance of the UN Standard Rules for Slovenia I thought that, as a secretary of young national Association of Forum of Slovenia, founded 1996, I should contribute some additional information about the situation of Slovenia.

There are more than 11 national organisations of persons with disabilities (recently we have a lot of problems with equalization of opportunities). While Slovenia was part of the former Yugoslavia, there were 11 national organisations, but since becoming the independent state, Republic of Slovenia, new organisations have been founded such as: Tisina, Sklad Silva, our own forum, etc. The biggest problem for all of us is accessibility to financial resources to realize our programs.

In Slovenia, there is a special foundation for financing these organisations, however the 11 organizations from the former Yugoslavia are not allowed accessibility under the current independent Government. We had a lot of big battles. The main problem is that there is discrimination of priviliges to organisations of disabled people; they are all lumped together as disabled people. They try to limit us with different unfair and undemocratic internal rules, laws. For example, I'm including general information about us and our projects which was not accepted equally - we'll be grateful for any kind of assistance or advice. We are looking for some international support, cooperation, exchange experience, advice, etc.

With best regards.

Yours truly,

Rafael Zupanèiè

Association of the Forum of Disabled of Slovenia
Zofke Kvedrove 22
SI-1000 Ljubljana
Slovenia
Tel +386 61 1686 618
Fax +386 61 345 581
GSM +386 61 41 672 747

President: Mr. Luj Sprohar
Vice-president: Dr. Danilo Pumpernik
Secretary: Mr. Rafael Zupanèiè

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The Programme

The Short and Mid-Term Projects of Sections of Association of the Forum of Disabled of Slovenia
Final Draft

"Never doubt that a small group of people can change the world. Indeed, it is the only thing that ever has."
Margaret Mead in 'Living a Full Life' by Ken Jupp

Index

1 Introduction

2 Review of Projects of Individual Projects

2.1 Scientific-theoretic Section

2.2 Health-rehabilitation Section

2.3 Educational and Training Section

2.4 Socio-economic section

2.5 Section for accessibility of environment and communication

2.6 Section for law and legislation

2.7 Section for informing

2.8 Section Culture and Art

2.9 Section for adopted sport-rehabilitation activities

3 Execution of Projects

1 Introduction

The social position of most disabled is extremely unfavourable inspite of the fact, that considerable funds are allocated to the disabled in Slovenia. Also the results of the research about the fulfillment of the standard regulations of the United Nations for leveling the possibilities for the disabled which was carried out by the Bureau for the Disabled of Slovenia in 1995, are not encouraging. Particularly worrying is the data in the areas of education and training, employment and social welfare, which is to a great extent the consequence of unclear legislation. In March 1996, there was in Slovenia from approx. 34.000 people disabled, which are registered at the labour market, some 7.570 unemployed (22.3% is the rate of unemployment). All this shows the inefficiency of the past policy relating to the disabled, when the main care for the disabled was left to the large organisations for the disabled themselves.

Following the findings of the mentioned research and own experiences of numerous individuals, it is possible to conclude with sureness that functioning of the organisations for the disabled in Slovenia, which are joined in the Council for the Organisations for the Disabled of Slovenia, is not much devoted to the interests of an individual, his or her own personal development and rising the level of quality of his or her life. In the past few years we have seen a change in the atmosphere in Slovenia in aid of the new democratic initiatives and because of such an unfavourable social position of the disabled, a new Forum for the Disabled of Slovenia was born as an Association with the task to try to improve integrally the conditions in this area. The goals of the Forum are in harmony with the goals of the new social and consumer movements of the disabled in the developed and democratic states in Europe and in the world. In this respect the Forum represents an alternative to the existing, stereotype organisations of the disabled. The Forum is arising from the belief that the disabled have their right to an integrated life and that the conditions which are reality in Slovenia do not allow them to carry them out. Thousands of heavily and heavy disabled individuals finds no identity in the Slovenian society as often they cannot satisfy their basic human rights - the right to their free decision with education, choice of profession, choice of place of living, the right to labour and social welfare is not carried out.

The basic task of the Forum will be to push through legally guarded paths, which will give to each individual an opportunity, inspite of his or her handicap, to follow and see his or her life ambitions come to reality. The Forum will respect the needs and interests of each individual disabled, which according to each special type of conditions demand also special original solutions which cannot be subordinated to no "higher" or "quasi common" interests, regardless whether they are supported by the state, organisations for the disabled, carriers of the social services or anybody else. Integration into the environment cannot be unreachable category, but has to become a possibility whose level and extent are to be left to the choice of each individual. The system of social services can be considerably improved with two presumptions: (1) with greater awareness of the disabled - user of the social services and his or her familiarity with the issues in question, and (2) with direct enforcement of interests of the individual disabled which is now in the present system through the organisations of the disabled badly or not expressed at all. For such a confrontation a rearrangement of forces is needed among discriminated social group, which the disabled definitely are and corresponding institutions or even more generally, between an individual on one hand and the authoritative structures on the other.

Theoretical concepts of the modern social - user movements of the disabled assure more appropriate terminology in the area of the disabled. The term "invalid" by itself because of the meaning of less value or lower value is not appropriate. The United Nations themselves dissuade this term as well. The World Health Organisation (WHO) suggests for the condition of lessened functional effectiveness, which is the result of the injury or illness, the term disabled, which has as a result the hindrance or handicap in the physical or social environment. New socially consumer movements rather use the term disablement that the hindrance is in reality the consequence of the discrimination relation which the society has towards physically, senzorically or mentally disabled. Such relation, burdened with all sorts of prejudice, is the result of historical development and cultural conditions.

The Forum is, thus, planning a mid-term experiment of gradual transition towards more appropriate terminology.

We may observe that marginal social groups abroad, where the disabled belong at present as well, have much more possibilities to improve their deprivileged position in the society, if they appear united. Thus, the Forum will inspite of the specifics of individual sorts of handicap unite all sorts of disabled, include the physical and mentally disabled. These groups have so many common characteristics in their social position, that such a connection is sensible.

The concept of plenipotentiary of the disabled of all sorts is in line with the aims of the modern social and user movements in the western world, thus it is quite logical that the Forum will cooperate with them, especially as these movements have international character. The aid of foreign sociological experts will be necessary in order to bring into force the sociological or cultural concept of the disabled, and at the same time we shall get to know in such a way the European standards and universal documents which are dealing with the areas of social welfare. In the first place we shall be in touch with the two British populist- activist organisations the Union of Physically Impairment Against Segregation (UPIAS) and the British Council of Organisations of Disabled People (BCODP) and an international patron organisation Disabled Peopleâs International (DPI).

The Forum will carry out the indicated programme orientations and goals set as projects which will be carried out by nine different sections. These are scientific- theoretical, health- rehabilitation, educational- training, socio- economic section, section for accessibility of the environment and communication, section for law and legislation, section for informing, section culture and art, section for adopted sport-rehabilitation activities. The classification of activities to such sets of content is the same at the one used by the UN for leveling the possibilities of the disabled, which are the most specified international criteria for ascertaining the development level of the welfare of the disabled and with this a good instruction for activities in the field. These rules and regulations are divided into three thematic units. (1) First the preconditions, which have to be fulfilled, so that it is possible to create conditions for leveling the possibilities. Here comes the awareness of the public about the disabled, their needs, rights and conditions, health and rehabilitation and assuring the supporting, as for instance the orthopedic aids. (2) Second are the areas aimed at. This is the accessibility to the physical environment, information and communication, education and training, employment, financial aid and social welfare, family life and personal integrity, culture, sport and recreation and faith. (3) Third unit talks about the measures, by which the policy of leveling the opportunities is actually carried out. Here are classified the areas of information and research, modeling of policy and planning, legislation, economic policy, work coordination, functioning of organisations for the disabled, training of expert cadres, national overview and evaluation of programmes about the welfare of the disabled, technical and economic cooperation and international cooperation.

As we have already emphasized, the functioning of the Forum will be in harmony with the regulations aimed towards such changes of the social environment, which will enable the leveling of possibilities to assure special living needs to all kinds of the disabled, and that in such a way, that the center of the future policy for the disabled will become the disabled individual him or herself. We shall exercise such an orientation with concrete projects, which were pledged by individual sections. Just the drafts of the projects are indicated here, which are not to be understood as something final, but just as the area of activities, which can be dynamically changing according to the possibilities and the needs.

If we want to carry out the indicated projects, we have to attract for the work a wide circle of all those, who can participate constructively and suggestively towards realization of these ideas. Thus, the Forum does not unite the disabled only, but also the political, cultural and scientific participants, who have psychological, legal and actual power and who agree with our theoretical starting-point. And so united we shall be able to carry out numerous projects. We shall equip ourselves with three tools: (1) knowledge, (2) experience and (3) arguments. The knowledge we do not lack, but there is never enough knowledge, we shall continuously improve it. Experiences we are not short off, as we always have and still are in the hard school of life of the disabled which we experience on our own skins every day. With the help of all our contributors we shall acquire the arguments, unless we have them already. We wish and want to become a factor, the political sphere and the power will have to count with very seriously.

We have to be aware that our society is in the transitional period from the socialist- self-management into market-oriented economy. The period is extremely difficult and demanding. Although the welfare for the disabled does not belong into the area of prime importance in the transition, inspite of that it is felt in the top political circles the tendency to redefine the role of the welfare of the disabled. Among the carriers of the welfare of the disabled and the disabled themselves, a more concrete tendency for a dialogue about social orientation of the institutional structures and the state is also felt. More and more democratic orientation of our governmental organs and respect of the legal principles is showing hope that the goals of the Forum will come into life at least partially.

2 Review of Projects of Individual Projects

2.1 Scientific-theoretic Section

It will try to create in the society as much as possible a really true picture about the phenomenon of the disabled which will be supported with its own experience as well, which is missing in all so far interpretations. We shall show the processes which brought to the social conditions, the disabled population is faced with and about the possible solutions and perspectives in the future. This programme will be carried out in the following ways:

2.1.1 Information and publishing activities in the media
Coordinator: mag. Luj Éprohar

This project will continue according to the actual needs and possibilities. The members will publish articles in daily newspapers and magazines and participate at the national and local radio and TV stations. This activity will strengthen itself in the future. We are preparing also pages of the Forum on INTERNET. If and when necessary, we shall organise press conferences and other gatherings and meetings with the press, social and political experts, where we shall present the current problems which will show up at our work.

2.1.2 Publication of magazines dealing with the problems of the disabled
Coordinators: mag. Luj Éprohar
Maks Cerovûek
Rafael Zupanèiè, ing.

There are a few gazettes in Slovenia which are devoted to the problems of the disabled, however, it is characteristic for them that they have primarily a very particular character as they are devoted to the interests of individual groups of disabled only. Unfortunately, their orientation is not turned towards the enlightenment of social discrimination of the disabled and their problems while trying to include themselves into the life in the society. Here are also important the interests of the disabled pensioners which are connected with general life questions and problems of the pensioners in the third period of life.

Thus, the Forum will try to publish market interesting journals, which will deal with basic questions relating to the disabled and show them in the concept of the modern social- consumer movements. The main purpose will be to inform and to keep aware the public and in that way influence the change of public attitude towards the disabled and enable the conditions of equal starting possibilities for their creative inclusion in the society.

2.1.3 The historical and sociological aspects of the concept of disabled
Coordinators: Dr. Darja Zavirûek
Jelka Ékerjanec, social worker graduate

The enforcement of the modern sociological and culturological concept of disabled will require the assistance of domestic and foreign sociological experts. To this end, we shall organise, in cooperation with international organisations for the disabled, several lectures of foreign well known experts and conscious disabled individuals who will acquaint us and public at large with the history of the problems of the disabled in the developed countries of Western Europe and in Slovenia, with the current conditions and with the perspective of new social and consumer movements of the disabled. The public at large will have an opportunity to come to know the phenomenon of the disabled in the context of sociology of the marginal (discriminated) social groups.

This cooperation will enable all the users of social services to get theoretical and routine knowledge for the execution of projects, which will be in favour of the users of social services prepared by the consumer movements. On the other hand, we shall get to know the European standards and universal documents, which deal with the social welfare.

2.1.4 Translations and publishing of professional literature relating to the contemporary views on the concept of disabled
Coordinators: Vlasta Hribar, SHEN QI Instructor
Jelka Ékerjanc, social worker graduate

The sociologists, historians and other experts in the countries of the European Union, USA and elsewhere, are trying to shed light on the phenomenon of the handicap people from all aspects. There is no complex sociological theory about this issue as yet, however, there are very good and exhaustive views mainly by the authors with first hand experience of handicap.

This type of literature, unfortunately, is not available in Slovenia. Thus, the Forum of Disabled of Slovenia will organise the publication of translations of some well known and important authors. For a start, we intend to issue the translation of an English author, Michael Oliver "The Politics of Disablement". The book is uncovering the appearance of disabled as a consequence of production methods and ruling ideologies in the countries of Western Europe and analyses the possibilities of influence of new disabled and consumer movements on the social policies. The author, is disabled himself, thus very often more authentic in his explanations. The other important creator of new age view on the disabled is Jenny Morris, whose works are written in a more simple way so that they are accessible to a wider range of public.

The most important goal of publication of this type of literature is to communicate to the public at large a more realistic situation of the issue of disabled. This area is very marginally covered in Slovenia. Thus, these publications will at the same time represent a challenge to the historians, anthropologists and sociologists in order to shed light on the phenomenon of disabled in the Slovenian circumstances which were and still are in the countries of Western Europe.

2.1.5 Organisation of International Conference on Human Rights of the Disabled
Coordinators: Doc. Dr. Darja Zavirûek
Ivanka Kotnik
Jelka Ékerjanc, social worker graduate

This project, of mid-term character, will be carried out in cooperation with international organisations, however, we shall seek the help and assistance of governmental and other institutions, as organisation of such a conference is very demanding and extremely complex issue. The project is very topical and domestic and foreign echo is expected, thus is has high priority in the work of Forum of the Disabled of Slovenia.

2.1.6 Cooperation in the Orgranisation of Summer School for Practical and Theoretical Aspects on the Policy Relating to the Users of Social Services
Coordinator: Ivanka Kotnik

The first International Summer School about Discrimination of Users in the Area of Disabled and Increase of their Rights "Care with the Courage" was organised in Portoro` in 1996 by the High School for Social Work and Ms Jelka [kerjanc, social worker graduate. We propose that this Summer School becomes a traditional one, and we shall strive that the Forum of Disabled of Slovenia becomes co-organisor. We believe that this school is an ideal opportunity to face with various views relating to the rights of the users in the social services and social policies. Very useful instructions in social policy-making towards disabled will be christalysed at the confrontation of views of governmental and expert institutions on one hand and end users on the other. Members (male and female) of Forum of Disabled of Slovenia will participate with lectures and reports and represent their views at round tables and other programmes of the school.

2.1.6 The Position of Disabled Women
Coordinators: Jelka Ékerjanc, social worker graduate
Ivanka Kotnik

The project will deal with the issue specific for disabled women and will aim to present their role in the society.

The basis of this project is to validate the role of disabled women which they have and to draw attention to the mentioned possibilities, in order to bring them into effect as women. The following activities are foreseen in order to carry out the project: media, public tribunes, round tables, etc.

2.2 Health-rehabilitation Section

Health-rehabilitation section will monitor conditions in the field of health and rehabilitation of disabled and ensure the aids which enable the degree of independence of disabled during their everyday lives.

2.2.1 Health insurance of disabled in the light of new economic and social welfare conditions
Coordinators: Marjan Gruûovnik, dipl. lawyer
Nataûa Chvatal
Maja Pleûej-Dovjek, dipl.oec,

Association of Consumers of Slovenia
Rafael Zupanèiè, ing.

Transition from socialist self-management to liberal market-oriented economy and ideology is bringing new conditions in the social policy as well as in the area of disabled social welfare. So that this area will not be neglected, we shall make efforts to do the following:

1. Prevent the decrease of complete level of health welfare for disabled, who are extremely depending on effective health services for a number of specific reasons.

2. Prevent the reduction of special health services for the disabled.

In order to carry out the goals under Point 1, we aim to do the following:

• supplement the Law on Health Welfare for the Disabled and Health Insurance
• all attention will have to be paid to the definition of rights of disabled related to the health insurance
• these rights are to be defined very clearly in cooperation with suitable expert services.

Under Point 2, we anticipate the following activities:

• co-participation of disabled when modeling the criteria, normatives and standards
• expansion of rights of compulsory health insurance in terms of the proposal of the supplement of Regulations of obligatory insurance of AHIS (ZZZS).
• exact definition of the term "the Standard" at AHIS and definition of criteria for setting the standards
• consideration of world standards for quality of orthopedic aids (certificates of quality of manufacturers)
• influence the change of point of view of AHIS relating to the net rentals of orthopedic aids (rationalization should never effect the quality of life of the disabled; the right to acquire the orthopedic aids, without real possibility to put it in action in life alone means nothing as yet).
• the cheapest orthopedic aids have to be of good quality and functionally adapted to the end users.
• cooperation of end users with the choice of suppliers of technical and orthopedic aids (criteria to choose the supplier: quality, testing, expert qualifications, service and adaptation).

The concrete activities will include:

• the seminars and round tables with participation of suitable politicians, experts and representatives of institutions
• publication activities, include issue of brochures with the aim to inform the disabled and public at large.

Some of the suggestions for seminars and round tables:

• greater role of care in the healing process
• the relationship of medical personnel, health personnel and nursing personnel towards the end users in public and private institutions.
• the gap between the theory and practice of assuring the orthopedic and technical aids
• personnel normative for health and care services in the social institutions
• forming the mobile service for user net in the larger cities.

2.2.2 Rehabilitation of the Disabled
Coordinators: Stanka Ristiè-Kovaèiè
Mirjam Trampuõ
Dr. Janez Zidar
Marjan Klemenèiè

Rehabilitation of the disabled is a holistic process and contains medical, as well as educational, professional and socio-emotional rehabilitation. Medical rehabilitation is relatively well developed in Slovenia. We are supporting new methods of work, for instance, individualisation supported by Prof. Tone Brejc at the University Institute for Rehabilitation of the Disabled. Although the medical rehabilitation is the basic form of rehabilitation, we shall strive that the appropriate institutions will devote greater care to other forms of rehabilitation, particularly to the socio-emotional rehabilitation, which has to be present in the whole process of expert aid to the individual and is the pre-condition for the disabled to enter the social life on equal basis. Particularly traumatic is the period of time when the person finally faces the truth that he or she is now disabled and feels the extent of his or her new condition in life to the full. During that period, the disabled need strong psycho-social help individualised or custom-made. It is strongly advisable that these institutions would pay more attention in the period of re-novation rehabilitation. We also note that professional counseling, qualifications and restructuring have no proper role in relations to the education and rehabilitation. In the field of organisation of rehabilitation we shall support greater cooperation of disabled in the rehabilitation programmes, as the disabled have a lot of useful ideas and suggestions and real-life experiences.

Within the legislation of disabled, in cooperation with the Office for the Disabled of Slovenia, we shall support the preparation of such rehabilitation doctrine, which will take into account all above mentioned areas and will represent the basis for the policy in this field.

2.2.3 The Issues of Medical-renovation Rehabilitation and Spaâs Healing
Coordinators: Marjan Gruûovnik, dipl. lawyer
Marjan Klemenèiè
Aleû Rus ing.

Medical-renovation rehabilitation is, in a wider sense, that area of the medical field, which is involved in decrease and partially with removal of effects after illness and injuries. Thus, its role in the area of disabled care is extremely great.

Our goals in carrying out medical-renovation rehabilitation, will be the following:

• to establish the carrying out of the re-novation rehabilitation in the appropriate institutions (concession), as Slovenia cannot afford the situation whereby each association for disabled would have its own rehabilitation center
• to enable to the disabled and their family members active participation with rehabilitation planning
• to ensure regular re-novation rehabilitation to as many groups of disabled as possible
• to include into the rehabilitation more SPAâs and with the help of the society special units for the disabled are to be launched.

2.2.4 Medical Aspects of Individual Forms of Handicap
Coordinators: Dr. Janez Zidar
Dr. Fedor Peèak
Marjan Klemenèiè

The aim of this project is to inform all disabled, their relatives, nursing personnel and public at large about the medical aspects of individual forms of handicap. It is important, however, that all the disabled and other people get to know in detail (are faced with the truth in detail) the specific medical characteristics of each injury, illness or handicap, prevention of dangerous accompanying illnesses, particularly chronicle ones, special medical needs, adequate way of life and other medical questions. It is necessary to be up-to-date with new achievements of medicine for correct treatment of illnesses, which result in handicap, with prevention of disabled as a result of hereditary illnesses and with reparative achievements.

Concrete activities will include the same forms of work as indicated under 2.2.1. It would be necessary to take into account the so called "mobile welfare centers or clinics" which would carry out specialised check-ups in the clinics specialised for a particular range of disabled in the presence of medical general practitioners and other medical personnel which would in this way get to know specific problems.

2.2.5 Disabled through Occupational Illnesses - Unnecessary Evil
Coordinators: Prof. Dr. Leo Éeûerko "Green Alternative"
Katarina Modic
Mitja Èander

The Law on Medical Welfare is defining the responsibility of employers for maintenance of medical working environment, however, we have not come much further from the declared principles in this area only (on the words level only). As the occupational illnesses and with them connected handicaps are very often preventable, we shall try to:

• provoke such a policy which will be oriented towards ecologically incontestable economy (cooperation with "Green Alternative")
• keep evidence of ecologically contestable working posts and from the point of view of safety and health contestable (cooperation with Bureau of Slovenia for safety and health at work and with Institution for Pensions and Insurance for the Disabled of Slovenia)
• periodical prevention restructuring of workers from the working posts, which are not ecologically incontestable, but are still essential in the process
• control over execution of legislations in the area of safety and health at work (in cooperation with Inspectorate for Work of Slovenia)
• early detection and healing of injuries and illnesses for prevention and decrease of effects of disabled

Concrete activities will be included in the same forms of work as indicated under 2.2.1.

2.2.6 Healthy Life and Friendly Environment - Enemies of Disabled
Coordinators: Prof. Dr. Leo Éeûerko, "Green Alternative"
Prof. Dr. Arsen Éurlan

The project will be carried out in cooperation with the Green Alternative. As it has mid-term and long-term character, we indicate only the themes it will involve:

• views on the possible prevention of handicap as a whole, which are in harmony with "Healthy Life Concept" in a very broad sense (also shedding light to some new areas of medicine, such as genetic engineering)
• our aim is "Friendly Environment" which will not be only urbane and ecologically improved, but will also prevent the discrimination of existing marginal social groups

continued...2.3 Educational and Training Section

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