PROCESSES OF CHANGE IN THE LIVES OF PERSONS WITH INTELLECTUAL DISABILITY FROM ROMANIA

ROMANIAN NATIONAL REPORT

Team Coordinator: Conf. Dr. Teodor Mircea Alexiu West University - Timisoara In collaboration with: Laila Onu Vice-president of Inclusion Romania Aurora Toea Director of C.R.I.P.S. - Bucharest Radu Sergiu Ruba Vice-president Romanian Association for the Blind Persons Prof Johans Sandvin, University of Bod - Norway

Financed by Sida, Swedish International Development Agency

INTRODUCTION In studying processes of change in the life of persons with intellectual disabilities our research team had to face many challenges. First we had to clarify the concept of quality of life in a period with too many models and too few clear principles to follow. In fact, the quality of life is a rather subjective concept, based on personal satisfaction and therefore very difficult to assess. This difficulty is even harder to overcome when your subjects are persons with intellectual disabilities. Thats why we had to base much of our assessment on the accounts from parents and staff members and to focus on our own observations and insights. For this we are in depth to several organizations, families and individuals who shared their experiences and efforts and made us understand that even with a lack of material resources, lack of space, unavailability of information, inadequate guidance from professionals and even with limited intellectual abilities, many things are possible. Another striking point was the strong belief in material conditions as a basic factor for needs fulfilment. In fact many of the managers of the projects we visited presented with pride their new heating systems, the modern kitchen devices or the well equipped bathrooms from their institutions. This is probably understandable in relation to the general living conditions in our country and especially in organizations and families facing disability. But what we discovered in our research is that the images of and attitudes towards persons with disabilities are fare more important for the understanding of the quality of services than any material aspects. In every instance of success, in terms of improved quality of life for persons with intellectual disabilities, we saw examples of caring, of dedication, of creative solutions, of innovative strategies, of wanting the best for the child, willingness to face and overcome stigmatizing situations, ability to postpone/put aside personal interests to the benefit of more critical or basic needs of another. Another difficulty was the necessity to choose between many strategies or models of service delivery. The selection is based on comparisons and to compare is very difficult in such a complex social world. Everybody is looking for the right model but the complexity of particular situations led to a multitude of right models. So we had to choose between the most complex projects trying to learn from their strengths and weaknesses in order to identify factors leading to positive change that could be transmitted to the people working in the field. We did not intend to make a hierarchy among different projects who applied for this study. Instead we tried to make a selection reflecting a variety of projects and services in Romania. And finally we had to clarify who the audience for this report should be. We hope that it will go beyond academia, on to the professionals who are working directly 3

with intellectually disabled persons. But we also hope that it will be available to the parents and families of disabled people. We hope that this report will contribute to the empowerment of parents and service providers to seek and develop better and more appropriate services. We also hope that those in charge of the administration of professional and other organizations in the community that reach out to parents and persons with intellectual disability will also access this report. We hope that they will be able to use this information and insight to bring about even more effective programs and sensitize persons to existing conditions in the Romanian context. And we hope that the report will be accessed by governmental organizations that are indirectly and directly involved with policy making regarding disabilities as well as funding such initiatives.

Background and aims

SHIA (Swedish Organisations of Disabled Persons, International Aid Association)/FUB (The Swedish National Society for Persons with Mental Handicap) and Inclusion International agreed in 1998 to support a collaborative project Global Project on Human Rights/UN Standard Rules with the following three components: 1. To influence UN bodies to increase the use of the UN Standard Rules and other UN Human Rights instruments to monitor the rights of persons with disabilities in general and children and adults with intellectual disabilities in particular. 2. To achieve sustainable improvements in the conditions of children and adults with intellectual disabilities in Kenya, India and Romania through Influencing decision makers and authorities to implement the UN Standard Rules Supporting NGOs that fight for the rights of children and adults with intellectual disabilities Forming and supporting Parent Mobilisation Action Groups (PMAGs) Using models developed in South Africa as a source of inspiration 3. To study the processes and methods described above - as well as other similar initiatives - in order to identify the most successful ways to achieve sustainable improvements in the conditions of children and adults with intellectual disabilities. The study is the third and independent part of the project. It has been commissioned by Inclusion International and financed by Sida (the Swedish International Development Agency). The aim of the study is to explore, understand and describe successful change processes and learn from them. The following research questions have been addressed: Which projects resulting in sustainable improvements of life conditions for adults and children with intellectual disabilities can be found in the four countries? Which are the most strategic change agents, internationally, nationally and locally? Which methods are most effective in order to initiate and maintain processes of change? What other factors, deliberate project interventions as well as contextual factors, are important to achieve a positive change?

The study includes four national studies in India, Kenya, Romania and South Africa. There will also be a final comparative analysis based on the national studies.

Organisation of the Study The study has been guided by a Reference Group in Sweden 1 . Research teams consisting of 4-6 persons have been established in each country according to the following guidelines: - The teams should include one person, who has academically achieved a doctors degree (or similar research background) to ensure the scientific level of the study - The team should include two representatives from the disability movement to ensure a user perspective of the study. At least one of them should be a parent from the Inclusion International partner organisation2 . - The team should have a team coordinator who is responsible for the actual planning and implementation of the study and for the timely reporting to the coordinators in Sweden.

Reference Group

Swedish coordinators and scientific advisors Prof. Anders Gustavsson Prof. Johans Sandvin

South African research team

Indian research team

Kenyan research team

Romanian research team

Barbro Carlsson, Chairperson and previously Secretary General of SHIA, Viktor Wahlstrm ex-president of Inclusion International, Fred Heddell, treasurer of Inclusion International, Tiina Nummi-Sdergren of SHIA, Professor Anders Gustavsson, Stockholm University who has served as a scientific adviser and Annika and Lennart Nilsson responsible for coordination, administration and reporting of the study 2 Parivaar in India, Inclusion from Romania in Romania, DICAG and DSSA in South Africa and KAIH in Kenya

In Romania the following persons have been on the research team: Prof. Ph.D. Teodor Mircea ALEXIU, West University, Timisoara, Faculty of Sociology and Psychology, Social Work Department, as team coordinator; Laila ONU, vice-president of Inclusion Romania, parent of a mentally disabled child; Sergiu Radu RUBA , vice-president of the Romanian Association for the Blind Persons, himself a blind person; Aurora TOEA the director of the Centre of Resources and Information for Social Professions.

Definition of Intellectual Disability In this Study we have used the following definition of intellectual disability 3: Intellectual disability is a condition where people have significant difficulties in learning and understanding due to an incomplete development of intelligence. Their skills in areas such as cognition, language, motor and social abilities can be permanently impaired. Between 1 % and 3 % of a population have an intellectual disability. A person with intellectual disability has life-long developmental needs. Intellectual disability is a condition of slow intellectual development, where medication has no effect. Intellectual disability can be caused by genetic factors, or by environmental factors, such as infections, or by a lack of oxygen supply of the brain during pregnancy or at birth. Intellectual disability is normally not caused by social or psychological causes. Difficulties in learning and understanding lead to problems in school and working life and to difficulties in being included in the regular life of society. There is a large variety of appearances and degrees of intellectual disability requiring different forms of therapies or support. Intellectual disability is permanent. Intellectual disability is different from mental illness. Mental illness is an illness and can be cured, whereas intellectual disability is a life-long condition. People with mental illness need mental health care, medical and psychotherapies. In general they have no intellectual impairment and can live independently when their mental health problem is controlled. People with intellectual disability are not ill, unless they have a common illness. They need easy-to-understand information, education or training to live included in society.

Inclusion International information leaflet

In Romania, the state constitution refers to the protection of handicapped people, and the word handicap is used in official law and policy, though experts agree that such terminology is outdated and stigmatizing. There is no specific definition of intellectual disabilities used in legislation, nor are there discrete statistical data on the number and situation of people with intellectual disabilities. The most frequently used term is mental handicap, and in some cases, mental deficiencies. The first definition of persons with handicaps appeared in Law 53/1992 on the Special Protection of People with Handicap, which has been modified three times, most recently by Law 343/2004. The definition remains outdated, however, as it is based on terminology elaborated by the WHO in 1990. Experts in the field have called for the definition of people with handicaps to be reworked in the Romanian legislation, to bring it in line with definitions accepted at the international level. According to Law 343/2004, which modifies and completes Ordinance 102/1999 on the Special Protection and Employment of People with Handicap, people with handicaps: are those persons whose social environment is not adapted to their physical, sensorial, psychical or mental deficiency, limits or totally hinders the persons equal access to social life in conformity with their age, gender, social, material and cultural factors; the persons also require special protection measures for their social and professional integration. 4 Government Decision HG 1215/2002 on the Approval of a National Strategy for the Protection and Social Integration of Persons with Handicap in Romania defines a series of terms, distinguishing between deficiency, incapacity and handicap, while setting out the concepts of rehabilitation and recovery. Order 725/01.10.2002, jointly elaborated by the Ministry of Health and the National Authority for Child Protection and Adoption, establishes three structural and functional categories that are used to in determining the level of disability in children: mild intellectual disability, intellectual disability without another association, moderate, and severe and profound intellectual disability. This classification is drawn from ICD-10 standards and relies mainly upon IQ levels. A second order, promulgated at the same time, sets out similar classifications for the diagnosis of adults with intellectual disabilities 5.

Ordinance 102/1999, as modified by Law 343/2004, on the Special Protection and Employment of People with Handicaps, Official Gazette No. 641, 15 July 2004, art. 1

Order 726/01.10.2002 on the criteria upon which the grade of handicap for adults is established and the measures for their special protection applied, Official Gazette No. 775, 24 October 2002

Research strategy
A basic assumption is that both living conditions of disabled people per se and changes in such living conditions, to a large extent; depend on contextual characteristics such as the national economical conditions, rights and obligations linked to the citizenship, cultural representations and customs etc. As a consequence processes of change affecting the living conditions of people with disabilities are likely to differ between countries and action that prove to be effective promoting change in one country are not necessarily the most effective in another country. This has important consequences for our study. First, our understanding of the processes of change and improvement is better facilitated by rich contextual data than by comparisons with other similar interventions aiming at social change. As a consequence, extensive case studies are likely to be more helpful than broad comparisons of many different cases. We have therefore decided to limit the study to three successful projects resulting in improved living conditions of people with intellectual disabilities in each of the four countries. Secondly, in order to investigate and understand the dynamics of specific processes of change, the process first of all has to be studied in its own unique national and local contexts. This means that the projects will be studied in their own historical, national and cultural contexts and that the comparative phase of the analysis is introduced in the final analytical step to explore interesting similarities and differences in the basic factors of change identified in each individual change process. In short, the study starts with a rather open exploratory approach with the aim of increasing our understanding of successful projects in the four countries and identifying basic, important factors promoting change and ends with a more comparative approach exploring similarities and differences between the three processes of change analyzed by each national team. Because of the big contextual differences between and within countries, the research methodology has been developed in a participatory process where each national team has played an important role. Finding a common frame of reference for the choice of the successful projects The design of the study is rather open and sensitive to the approaches that the national research teams find most productive. However, identifying differences and similarities in change processes within the 4 countries requires a common basis for the selection of the cases.
The examples of change processes to be selected for the case studies should be called PROJECTS. A project is a deliberate effort to achieve positive changes in the situation for persons with intellectual disabilities. A project has a starting point and an end point.

It was agreed that

It was also agreed that the following 4 criteria should guide the selection process: 1. A substantial impact on the quality of life of persons with intellectual disabilities. The project must have impacted positively on at least four of the QoL domains in order to be selected (or had an exceptional impact on one of them). The following IASSID consensus quality of life domains was used as a common frame of reference 6 to describe quality of life. Emotional well-being: safety, stable and predictable environments, positive feedback, self confidence/feeling of value, absence of physical/sexual abuse or bullying/teasing Interpersonal relations: affiliations, affection, intimacy, sex, friendships, interactions Material well-being: ownership, possessions, employment Personal development: education, habilitation, purposive activities, assistive technology Physical well-being: health care, mobility, wellness, nutrition, Self-determination: choices, personal control, decisions, personal goals, independence Social inclusion: welcoming social networks/support systems, integrated environments, participation Rights: privacy, ownership, absence of unfair discrimination, barrier free environments. In order to make the quality of life domains more concrete and possible to use as selection criteria for the national teams, local interpretations were required. Based on interviews with parent groups and groups of persons with disabilities themselves, each national team documented practical, concrete examples of positive change in each of the 8 domains relating to the local context of children and adults with intellectual disabilities. An instrument, listing the most important characteristics of the quality of life domains, was developed in each country. An additional domain was created for the African context, namely Interdependence:

The Reference Group has examined different instruments and more general points of departure that could be used for evaluating impact of the successful projects. Different tools have different benefits and disadvantages. As we are about to study relative changes in various cultural, political and economical settings, we need to use a tool that is flexible, easy to use and which is not relating to too detailed and context bound measurements of life conditions. We need a qualitative instrument that can capture the improvements on both individual and society levels from a user perspective. In this particular study we give priority to strategies that are likely to picture the dynamics of the changes in an empirically sensitive way. While being aware that quantitative instruments usually are preferred when making comparative studies, we agreed that such instruments are not possible to use in this study. After a long discussion, the Reference Group decided to recommend the IASSID Consensus Quality of Life Indicators as more general guidelines in the choice of the successful projects. This means that we will use the indicators first of all as a list of qualities or criteria. We do not think that it would be possible to carry out precise measurements of individual persons quality of life or changes in their quality of life.

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meaning the supportive mechanisms and mutuality within the home and within the broader community. 7 2. Sustainability. The project must - have been in operation for more than 2 years - have less than 50% of its operations financed by foreign resources/funding or have a trend of phasing out foreign funding/resources without affecting the quality of the project and/or the continued efforts to achieve change. 3. Significant impact (substantial coverage) The project must have a significant impact in the community (nationally or locally) not only be limited to service provision for a small group. 4. Interesting The projects must be interesting to study. This means that - the projects should be different (national as well as local initiatives, government as well as NGO initiatives should be considered) - the projects should be innovative - the projects should provide many useful lessons - one of the projects should be implemented by an Inclusion International national member organisation or its affiliates (provided that the other selection criteria are fulfilled) These selection criteria were developed and approved at a joint meeting of national coordinators, Swedish coordinators and scientific advisors in June 2004. Selection process Invitations for nominations were distributed among organisations and networks known to the national teams. Both NGOs and government authorities were invited to nominate projects for consideration by the team. The nominations consisted of a motivation and an assessment in relation to the selection criteria. The reward for participation in the Study was the prospect of having your project exposed in an international publication. In Romania a total of 15 projects were nominated. Three projects were selected. A presentation of all projects meeting the selection criteria is published as a special appendix to this national report. The nominations were scrutinised by the national teams (in South Africa by an independent panel of experts) and among those fulfilling the first three criteria, the most interesting were chosen. An exceptional achievement in a difficult context and interesting and different approaches were factors that influenced the final selection. The decision was based on a consensus in the team. The projects and the motivations for the selection were documented and presented at a joint meeting of

The national QoL instrument is attached in appendix.

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the national coordinators, the Swedish Coordinators and scientific advisors in January 2005. At this meeting the selection process was discussed and approved.

The case studies General The selection of the three successful projects in the four countries marked the starting point of the main part of the study, where the coordinators of the national teams investigated the selected projects. Each project was studied as a separate case including both critical examinations of the improved living conditions (described in the nomination) and in-depth analyses of the dynamics of the process of change/improvement. Special attention was paid to experiences of persons with intellectual disabilities and their relatives/caregivers but a complete study of the process of change/improvement, data was also generated from other people involved (politicians, professionals, activists etc.) In order to include persons with intellectual disabilities, who have difficulties expressing themselves verbally, data from care-givers were triangulated with the researchers observations and nonverbal expressions. The case studies have a participatory approach in the sense that - the studies are organized in close collaboration with the DPO/parent members of the national teams - data is collected in a way that empowers the informants and tries out new models of communication highlighting the voices of persons with personal experiences of disability - the researcher gives feed back to the informants concerning preliminary results and understandings of the studies processes of change/improvement in a manner that is accessible to them (e.g. video or focused group discussions)

Focus of data generation Firstly, we focused on the special features of the project, including: Main characteristics of the project such as structures (physical and organizational), aims and activities, social practices, resources, donors, culture, conditions, networks, etc The changes it has brought about in the lives of persons with intellectual impairment as well as other signs of change that can be found at various levels (e.g. family, community, other projects/programs, policies, etc) which has impacted positively on the situation of persons with intellectual impairment. The voices of persons with intellectual impairments have been specifically heard and the changes and events have been described also from their perspective.

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 Commenting on the project in relation to the selection criteria (sustainability, substantial impact, improvements in the quality of life of people with intellectual impairment and interesting) with a focus on the outstanding elements The exceptional, unexpected and outstanding in relation to the context where the project is implemented Secondly, in order to understand what factors contributed to the outstanding and exceptional impact of the project, we focussed on mapping the archaeology or biography of the project. This includes for example: major historical events (forces behind initiation of project, forces behind policy shifts etc) transcending agents competing ideologies favourable incidents/conditions significant supporters important choices/decisions/connections made Method of data generation When generating the data we used the following methods: observations and participation in activities of the project informal conversations with people (service users, parents, staff, community members, community leaders etc) as many as possible deep interviews with key informants focused group discussions photo documentation made by people with intellectual impairment themselves study of reports, presentations and other relevant documentation available. The information was captured in field notes, photos and audiotapes. The audio taped data was transcribed and entered into a data processing system, coded and categorized.

Method of analyzing data The data generated in each case was analyzed using several steps known from Grounded Theory (Glaser & Strauss 1967, Strauss 1987) 8 , including examining interviews and field notes for themes, open coding, building analytic categories, constant comparison, looking for key categories and linkages between categories, and searching for patterns across cases.

Strauss, Anselm L. (1987) Qualitative Analysis for Social Scientists. Cambridge University Press.

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Cross-national comparisons On the basis of the national reports, the Swedish coordinators and the scientific advisors will make comparisons between the 12 projects analyzed by the national teams in order to identify similarities and differences across nations. The results will be summarized in a final report. Eventual limitations In our research team we had an ongoing debate about one of the selected projects: the ARNSBERG rehabilitation centre from ALBA IULIA. This is a centre providing rehabilitation services for children and adults living within its region, including people living in isolated communities in the mountains. The main problem regarding this project in relation to the inclusive perspectives of the study is the rather limited medical orientation of the centre. However, a more careful analysis of the ARNSBERG centre reveals several aspects that make the centre an interesting site to study. Even if it has a medically oriented approach, the centre also has a variety of other professionals, such as speech therapist, psychopedagogue, social worker, and psychologist. They all collaborate in a multidisciplinary team, and they all work according to individual plans for each child. It is also true that the philosophy of the centre seems to go in the direction of repairing or improving bodily functions, but access to adequate therapeutic services of high quality at an early stage is also an important aspect of improving the lives of disabled people. The centre is placed under the authority of the child protection agency and not under the medical authority. We were struck by the close and familiar relation between children and staff, the interest paid for each individual child and the close cooperation with parents. We also observed an emerging effort to emphasize more social aspects of childrens lives such as social inclusion and school integration, and even at the centre strong efforts were made to make childrens stay as normal and pleasant as possible. As the Director of Social Work and Child Protection County Direction ALBA, Mr. Chirila stated the social perspective should become a priority of this centre. And finally, and perhaps most importantly, we found that the project provided some very interesting lessons. By describing both positive and negative sides of the case and analyzing the factors behind these characteristics, we are confident that the scientific value of the study is not jeopardized by choosing this project for our study.

Report about the selection process performed by the Romanian team

Our team met on December 20th 2004 at PENTRU VOI centre in Timisoara for a whole day meeting trying to fulfil the task of selecting the three most suitable Romanian projects in the framework of the Inclusion International Study about the 14

QoL of Persons with Intellectual Disabilities. All the teem members were present (Teodor Mircea Alexiu, Laila Onu, Aurora Toea and Sergiu Radu Ruba). The first problem discussed was the small number of application received for this assessment phase. Indeed, as Mircea Alexiu pointed out, only 15 questionnaires were filled by different organizations out of about 250 sent within the established period (June October 2004). This was not an unexpected problem because the initial deadline of October 30 th was expanded due to this issue (only 6 applications were submitted within the initial deadline). And all the team members were then asked to exert their influence (by phone calls, e-mails, informal meetings, etc.) on project coordinators they knew of in order to motivate them to submit the applications. It was considered even a material reward (a small sum of money or a useful object) to increase the participation but finally we didnt come to that. The main reasons for this limited response as identified by the Romanian team were (not necessarily in order of their importance): There was an application deadline at the end of October and November 2004 for some funding agencies (PHARE and ANPH National Authority for Persons with Handicap) and all the efforts of the Romanian organizations were directed toward accessing these very important financing sources. The whole Romanian social services system was in a face of restructuring during this period (a centralization process at the county level unifying the Directions of Social Work with Child Protection Agencies) and all the organizations (mainly their leaders) took part in the process, trying to influence the nomination of friendly directors of the new structures. The period was dominated by political elections. The local elections in June 2004 determined changes in the local political and administrative setups and all the agencies were busy trying to find a better position and build useful connections with the new persons and heads of structures in charge of the future local budgets. The invitation letter that we sent out was rather complicated and the completing of self evaluating questionnaires was difficult and timeconsuming, requiring a complex analysis and reflection process. The agencies were at the same time expected to submit a number of official statistical documents and questionnaires from ANPH, finalizing their budget requests for 2005, etc. To be presented nationally and internationally as examples of good practice was not necessarily a sufficient motivation for participation in our study. From our discussions with different head of agencies we understood that they would have preferred a more material-type motivation (rewards of books, CDs, other useful objects, or future financing grants).

Finally we decided that the application phase was over, and we also believed that the 15 projects that had submitted their application was in fact the best in 15

the country in terms of improving QoL of persons with intellectual disabilities. We also decided to accept other applications that would not participate in the selection process but would eventually be part of an annex of the published national report. The 15 application that we received were from: FUNDA IA NGERII SPERAN EI, Lugoj FUNDATIA ALPHA TRANSILVANA, Tg-Mures, ASOCIA IA ESPERANDO, Baia Mare STAR OF HOPE ROMANIA, Iasi CENTRUL DE NGRIJIRE SI RECUPERARE ROBERT , Satu Mare 6. ASOCIA IA PHOENIX SPERAN A, Media 7. CENTRU DE RECUPERARE ARNSBERG ALBA IULIA 8. FUNDATIA PENTRU VOI, Timisoara 9. ASOCIATIA CASA FAENZA, Timisoara 10.SOCIETATEA ROMANA SPERANTA, Timisoara 11.CENTRUL DE EDUCATIE SPECIALA SPERANTA, Timisoara 12.DIRECTIA pentru PROTECTIA COPILULUI, Bacau 13.DIRECTIA pentru PROTECTIA COPILULUI, Dambovita 14.SCOALA SPECIALA SI BRUTARIA LACRIMA, BISTRITA 15. Centrul Rezidential GAVOJDIA 1. 2. 3. 4. 5. In order to make the selection we first tried to identify the projects that fulfilled the criteria defined by the Research Outline of the Study. We found that all of the projects have had a Substantial impact on the quality of life of persons with intellectual disabilities, at least from what they declared. It was difficult to rank according to this indicator based on their own statements since the applications did not necessarily contain the same type of information. The quality of the application did not necessarily reflect the quality of the projects. Thats why the team members used external means (direct and indirect information) and decided that all the applicants did fulfil this criterion. Then the team members decided that the three selected projects should be from three categories: Projects implemented by an Inclusion International national member organization or its affiliates; State owned and financed initiatives: local, regional or national projects; Non-governmental organizations initiatives and projects; We then grouped the projects into the three categories intending to select the best of each using the other criteria (sustainability, significant impact and interesting).

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The three categories included: 1. Projects implemented by an Inclusion International national member organization or its affiliates: FUNDATIA PENTRU VOI, Timisoara STAR OF HOPE ROMANIA, Iasi FUNDATIA ALPHA TRANSILVANA, Tg-Mures SOCIETATEA ROMANA SPERANTA, Timisoara ASOCIA IA PHOENIX SPERAN A, Media ASOCIA IA ESPERANDO, Baia Mare 2. State owned and financed initiatives: CENTRUL DE EDUCATIE SPECIALA SPERANTA, Timisoara DIRECTIA pentru PROTECTIA COPILULUI, Bacau DIRECTIA pentru PROTECTIA COPILULUI, Dambovita SCOALA SPECIALA SI BRUTARIA LACRIMA, BISTRITA Centrul Rezidential, GAVOJDIA 3. Non-governmental organizations initiatives and projects: CENTRU DE RECUPERARE ARNSBERG ALBA IULIA CENTRUL DE NGRIJIRE SI RECUPERARE ROBERT , Satu Mare FUNDA IA NGERII SPERAN EI, Lugoj ASOCIATIA CASA FAENZA, Timisoara Our team also decided that, because almost all of the first category projects are NGO initiated projects, after the selection of the best project in the firs category the remaining NGO-projects could compete even with those in the third category. About the first category selection we appreciated that the only project that fulfilled the criteria was PENTRU VOI Centre from Timisoara. All the other projects had either too few beneficiaries (Star of Hope 15, Alpha Transilvania 24, Phoenix Speranta 38, Esperando 57) or too much external funding (Star of Hope 100%, Alpha Transilvania 95%, Societatea Romana SPERANTA 86%, Esperando 80%, Phoenix Speranta 65%). The second category was a very difficult one because two projects were very close. First we had to exclude he DPC (Direction for Child Protection) projects whos objective was to train a certain number of state employed foster parents for the special needs of children with intellectual disabilities (like Star of Hope project) and who had been in operation for less than two years. The remaining projects were very similar being both centres for special education under the coordination of and financed by local Scholar Inspectorate from Timisoara and BISTRITA. The number of beneficiaries was also similar and the period of functioning was enough to meet the sustainability criteria for both projects. Finally we decided to choose the LACRIMA project from BISTRITA because of the interesting criterion 17

(the first Romanian special school initiated by parents of beneficiaries and interesting initiatives for the vocational training: bakery, candle manufacture, etc.) The third category was the most difficult because of the large number (we agreed to add the projects remaining from the first category). But in fact the sustainability criterion helped us to do a first selection; only two projects remained: Centre ROBERT from Satu-Mare and Centre ARNSBERG from Alba-Iulia. These were also both interesting projects: ROBERT utilizes dog therapy a special technique that is commonly used with youngsters with intellectual disabilities based on interaction with animals. ARNSBERG provide rehabilitation services for children and young people with disabilities living in isolated communities from the near by mountains training them for social and vocational integration. Finally, the significant impact criterion prevailed: ROBERT had 27 beneficiaries while ARNSBERG had 181; so our final decision for the third category was Centrul de Recuperare ARNSBERG, Alba-Iulia. This centre was an example of good practice even though it had a poor written application; the team members had to use extra information from other sources (we had to ask the director of the ARNSBERG centre himself in addition to other local organizations to obtain information that was not given in the application form or to verify the information that we had).

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LACRIMA SPECIAL SCHOOL, BISTRITA

Introduction LACRIMA Special School in BISTRITA is the only public school in Romania specially designed for pupils with more severe intellectual disability. The pupils at LACRIMA are children that would normally be excluded from any form of education and most often referred to confinement in closed state institutions or in their homes. It is also one of the few schools established by a parents association, and even directed by a parent of a disabled child.

A. DESCRIPTION OF THE PROJECT A1. Physical and organizational structure BISTRITA is a small town, the capital of BISTRITA-NASAUD County. LACRIMA (tear) Special School is located in UNIREA, a former village which is now a part of the town BISTRITA. The school is run by the Association LACRIMA, a non-profit organization of parents of intellectually disabled children. The school welcomes you with freshly painted green walls and a red colour roof, like a doll house, and a big garden in front of the entrance. The white stone ally leading to the main gate and the entire premise distinguish the school from the surrounding worn out buildings formerly inhabited by the German and Hungarian population. The building was raised using an old stables house basement. To day it is a modern building with two wings forming a big L. The school has small classrooms for the 74 children organized in groups of 4 or 5, and some workshops (for sewing, arts, candle making etc.). The school has also a very well equipped bakery, located in the yard, where some parents from the association are employed. The yard is impressive having a small lake with fish, a stable building for animals (dogs, rabbits and in the future two horses), a wooden house with four rooms for volunteers and enough space for a sports yard and a green house planned to be build in short time. The building contains an independent heating system, a modern kitchen and a dining room, a big festivity room and a sports room and various administrative offices. We were welcomed by the President of the association who is also the Director of the school. When we first visited the school it was holiday time, but we still found the Director leading some working groups. In fact he was sitting just in the middle of a group of volunteers from Belgium who were renovating the inner yard; they

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were working on a new sports field located to form an extension to the longer side of the L. The people employed here as educational personnel are young are friendly. Most of them have university degrees, and most of them have participated in courses abroad, in order to gain knowledge and skills for working with children with intellectual disabilities. Our second visit happened during the school year. We learned that the children are brought to the school in the morning at 8 oclock by the school bus and that they are brought back home by the same bus at 6 in the afternoon. During school hours they are taken care of by the 68 members of staff (29 teaching staff and 39 administrative staff). In addition to their learning the pupils are eating three meals a day, playing, sleeping and most of all enjoying every moment of the quality time spent in the school. We witnessed a lot of situations and emotional scenes accounting for the good and familiar relation between pupils and staff and heard stories about children insisting on coming to school even on holidays. There are also a few youngsters who keep coming even though they have graduated from the school. A2. Aims and activities Initially the school assured educational morning activities and speech therapy for 24 children, aged 9-12, with associated and severe disabilities. The Ministry of Education approved to adapt the educational content to the mental age of children without taking into account their biological age (the homogeneity of biological age in classes and the eligibility of special education only up to 18 years of age, were some of the characteristics of our national education system). There are also 6 children who cannot use the transportation and therefore receive education in their homes. To day the school is organized into four levels: Kindergarten Elementary classes (I IV) General education (V VIII) Vocational education (4 years) Over the last years the school has developed a range of other facilities, such as sports hall and playground, kitchen and lunch room, bedrooms for afternoon sleep, isolation and resting rooms, medical cabinet, kinetic-therapy room, and a club with computers, TV and VCR, DVD player for socialization activities. The psychologist offers counselling for parents, children and families. During holidays the school has visitors from other places or other countries attending parties and trips, and the majority of the pupils are also visiting other cultural or recreational location (the Felix Spa, the Zoo from TARGU MURES, the Joyful Cemetery from SAPANTA, etc.). 20

The aforementioned bakery has many objectives: to help gathering funds for the developing of the school and to be a practical education place for school pupils. It also provides bread for the daily meals. The director is planning to build a green house for vegetables, fruits and flowers and he would also like to get a couple of horses for stimulating the children. The two daily big moments of satisfaction is in the morning when children are climbing in the school bus (they have five gathering points in the city where parents bring the children) and in the evening at 6 pm when children are again on the bus leaving school to go home. The director mentioned that he feels the satisfaction of the work well done when he observes the joyful faces of the children in these two moments.

A3. Resources and alliances The school is placed under the authority of the local Scholar Inspectorate being a part of the national educational system. The local authorities are paying the bills and wages for staff and are responsible for one of the three daily meals. They didnt prove to be very generous; all the equipment they gave to the school being only a refrigerator. The school has a stable sponsor (a former colleague of the director) who helps with building materials and some 150 kilos sugar for each holiday. The director also is a well known local personality because he was a sports teacher and his former students are in important political positions; he also used to be an effective sportsman and coach of the local handball team and thats why he is helped by everybody (even if he reports that sometimes he heard accusations that he has build the school mainly for his own disabled daughter). Mass media transmit a good image of the school: there is even a TV show every month at the local TV station specially dedicated to the association. The director had a very successful protest activity with the daily basket for the children in special institutions (giving to the local authorities real baskets with a little food what an institution can offer a child each day with the little money that the state is giving as daily allowance!). The school building, the kitchen, the bakery and everything else, the cars, the lake, and so on belong to the parent association. The school uses the building and the land but doesnt own them. Almost 80% of everything is the property of the association LACRIMA. So the school is functioning under the approval of the Ministry of Education, and is supervised by the Scholar Inspectorate. The financial resources (for bills, staff wages and lunch for children) are coming from the County Council, but the 21

property of the building and equipments belongs to the association. The land is given in use by the City Hall for 20 years. The first location of the parents association, situated in the town centre, is now going to be transformed into a day centre for occupational therapy for the youngsters graduating from the school (because of their difficulty to find jobs). The day centre for occupational therapy has to have a different location than the school itself because of the different subordination - to prevent any eventual misunderstanding from different authorities (Child Protection, Persons with Handicap, City Council, County Council, etc.). The space in front of the school is public space but the school wants to keep it clean and flowery so that they intend to close it for private use and decorate it properly. They tried once to have tables, benches and flowers but the neighbours and the neighbours domestic animals didnt respect the work done there. The parents association does not interfere with the educational activities of the school and the local Scholar inspectorate does not interfere with the plans of the association. There were some discussions among employees about the autonomy of the school: It is very difficult, the director says, Because all that the scholar inspectorate had given in ten years was a refrigerator (the association had given the bakery, the heating system, the cars, the kitchen, furniture, equipment, etc.). The director fears that after a while the state will take over all the investments made by the association. This is what he tries to prevent by clearly separating the properties. The school has not only the aim of teaching reading, writing and calculating skills. For the parents association the school means life skills and rehabilitation, socialization and recuperation. These are the services necessary for the target population, not to mention the respite care service, which is very important for most of the parents who still continue to touch the financial right for assisting their children with severe disabilities. A4. Qualities and characteristics Why is LACRIMA centre an example of good practices and a model to be followed by other similar centres, or what are its most successful experiences? LACRIMA is a non-conventional school. The school age makes the difference with ordinary special schools. Usually ages are equal in a classroom and the students are not older than 18. This school obtained, because of long and strong battles with educational authorities, the permission to have in the same class students of different ages and even those who passed 18 years (the principle of grouping pupils into the classrooms was their mental age). Another important victory was the personalized intervention plan (individualized education) respecting also the curriculum imposed by the Ministry of Education. The teachers 22

and educators of LACRIMA had Swedish tutors to teach them how to work with autistic pupils. The importance of students evaluation of scholar performance is small, what really counts it is to develop their life skills (i.e. personal autonomy). I would like to find for each pupil his sense in life. I found out that these children also need our love maybe more than the others said one of the dedicated teachers from the school. The director is a very practical person even being a teacher (his subject is sports), but in his school the dynamics are more subtle with dedicated teachers and parents that help the director build and maintain the building. Still the main interest of the school community is the group of children! The teacher utilizes the rules and regulations of the education system to the benefit of the children. The state system evaluates the teachers, but their system is pupils centred (the transmission of information is subordinated to forming the skills for students). The teachers fight against formalism and ritualism in teaching. One of the teachers said: You cannot teach 1+1 because this is not relevant for any children; you have to take examples instead. About the relation between pupils and staff, the teacher said: Children dont call us Madam or Sir: they call us Ana or George, like we were their comrades. And we treat the children as they would be our own sons or daughters. In BISTRITA there are also three other special schools. The children from LACRIMA are the ones that are not accepted there. These other special schools are organized and oriented very much like the mainstream schools. But the LACRIMA School is different and it is considered different, and the children and teachers are feeling like forming a community not very well known and accepted. Thus they have to fight to maintain their characteristic features in the local community.

B. HOW THE PROJECT BECAME WHAT IT IS? B1. A quick biography On the actual location of the school one could find until 1994 the stables of the local agricultural cooperative. The director remembers the two offices that he renovated back in 1994, starting with the heating systems. In fact, after 1992 the parents of persons with intellectual disabilities from BISTRITA formed the association LACRIMA, Mr. SZORENYI being elected its president. The purpose was to find an educative solution for their children with severe and associated disabilities that were not permitted to attend the ordinary special schools. So they asked for and ultimately received from the city hall these stables to use them for a limited period of 20 years. The association received a substantial help from foreign partners (Sweden, Holland, Denmark). They raised the building of the school initially for 24 children (now the school has 74 pupils). The school has now three affiliated classes in a neighbouring city (NASAUD) and a day centre 23

(SANGEORZ) started as official special school approved by the Ministry of Education in October 1995. The school was financed by the city council and was subordinated to the local scholar inspectorate. In 1998 the local community of UNIREA didnt accept any more the school for disabled children in the neighbourhood and set the school on fire (even though most of the employees came from the same neighbourhood). About 80% of the school was destroyed. The educational activities were temporary transferred to a kindergarten in town while the parents began to rebuild the school. They had to work with a building firm and had many difficulties in paying the costs (the shortage of the budget being a characteristic of local and central authorities in Romania). Finally the money has been found from Romanian donors and foreign organizations and the new building was finished after one year in 1999. But the process of rebuilding and restructuring is still going on (new classrooms and speech therapy cabinets were build and also the bakery in 2003). The association is helped each summer by a group of 25 Belgian volunteers from the association GRADINITA BRUXELLES who bring funds and work physically to help raise the school buildings. For putting the bakery into official functioning 45 accreditations were necessary; 10 of them from the city hall, and each of them required a different, and a special file.

B2. Agents and ideas The Employees The personnel are mainly women, only one teacher, and a parent working in the bakery, the gate keeper and the director being men. The staff members are getting along well also because they are young and they have similar ideas, preoccupations and problems, the majority having graduated the same school (some of them are former school mates). Many of them started their teaching career here and feel attached to the school, which they consider as their main achievement (at least the didactic technology of which they are very proud). The male teacher, who spoke first in the round table we organized, stated that he started as an educator working with a class of 5 children in the afternoon. The children were in the 4 th grade that time. After three years he became a teacher and he accompanied them till now when they graduated the 4 th year vocational school (8 years all together). He was not specially trained for teaching disabled children and he tried to improve himself by studying. His satisfaction was that these children finally reacted like all the children when they graduated. They manifested their autonomy while they participated in a summer camp in Poland. He finally realized what a disability means and how you can overcome it, and he had the satisfaction of a work well done. In fact I had five children who manifested dedication for the school because they were treated with all our love. I also tried to share my experience with new teachers in our school he finally stated. 24

Not all the teachers and educators have remained since 1995. Some of them left because of the distance (the school is practically out of town) or because they could not adapt to the specific needs of the students. Some of them left because they could not pass the hard exam for becoming permanently employed, an exam organized by the scholar inspectorate (in Romania the teaching staff is not employed by the school but by the scholar inspectorate; and this is not very satisfactory for special schools that need specific skills for teachers a situation not very well observed by the scholar authorities). One of the most dedicated teachers stated: We have problems because people are leaving and coming. We know each other understand and collaborate well together, but we have to start all from the beginning with those who are new. People are leaving because they dont know the characteristic of the school. Teachers are coming because it is a school in town but they dont know the children. And some leave because its hard and different and you have to work hard at the beginning to adapt yourself. Some of them cannot make this effort and realize that they cannot work with special children. Those who are staying remain because they like the premises. They feel at home here and they dont hurry home when they finish classes (as in most schools), but they stay to help and do whats to be done. They have almost all of their friends there and they feel like in a big family. They invested parts of themselves in this school. They feel sometimes that the children are somehow their children and they have responsibilities for them, like real parents. The children also are coming here with pleasure as if it was their second home; their second family. Sometimes the children are more pleased here then home, maybe because here they are better treated and feel that they receive more love and protection from the teachers then from their own parents (sometimes the parent do not have enough time, energy or the same facilities as the school). As already mentioned, not every teacher that began here also remained, but those who stayed did a very good job. They became leaders of the method commission of the local special schools and even adapted teaching methods used abroad and introduced it to a Romanian context. They discovered that for a teacher it is not so important to know many theories or to meet a lot of formal methodological requirements as long as you are able to develop basic skills for these children with severe and multiple disabilities. One of the first teachers of the school who became the assistant director for education stated: I always wanted to work with disabled children because I wanted to help people who really needed my help. I started as afternoon educator for a group of children, some of them didnt communicate at all. I felt useless and I wondered what to do. Nobody talked in the classroom and I went home anxious about my possibilities. I began to know these children, not by evaluation procedures but by visiting them in their homes. There you can learn what they want and what make them feel good 25

and also about the parents responsibility and wishes. They are coming to our school usually not for reading, writing and calculating but for gaining some useful practical abilities. Then the teacher was promoted psycho-pedagogue for 4 years and responsible of a group of children. She collaborated with other special schools, she attended conferences and colloquies discussing about the program of personalized intervention that nobody knew what it was. She is proud to have overcome these problems by adapting a foreign model to the specific requirements of her school. The entire pedagogic community of the department was pleased to adopt this model. Then she adapted the educational curriculum to the needs of the children. All this activity was presented in a reunion with all the teachers of special schools in the county, and they didnt give credit at the beginning because she was very young looked like she needed supervision. She finally created a working instrument that allowed for evaluating the child at any moment by any teacher, educator or any other person involved in the education process. She now coordinates all the teachers from the special schools and everybody give her credit: she got approval even from the Ministry of Education. They had and still have support from Swedish teachers telling us how to work with children with intellectual and associated disabilities. They found that teaching means not only to give reading and writing skills but also to learn the children how to wash (how to take a shower) how to eat or behave in a new environment. They got involved in each child and they did not end the process before every child had its own way in life. The most important thing is to do simple things, things that are mandatory for independent living. In most of the schools teachers take their registers, enter the classrooms, do their job and then go home. In LACRIMA school it is different; one has to work with each child in a different way, to personalize the education. You can get supervision from more experienced colleagues, you can get feedback from the parents, but mainly you have to try yourself to transmit your knowledge to specific children in specific ways. One of the newcomers told us: Ive got supervision from two of my colleagues, and I learned to be involved more in the childrens lives. I found that these children have a special need of love and protection; they also have the same needs as any children to be protected and respected. She participated in a session on training for special schools in CLUJ (a well known university centre in Romania) this year and she was praised for her contributions. It was difficult at the beginning because some of the children refused to talk with her in the classroom. It helped a lot to participate in the conferences organized monthly in school where the students and not the teachers were analyzed (usually our education system is teacher-oriented and all the trainings are for the development of teachers activities and nobody cares if these things are good for children). So, she learned that it is not important to do a brilliant lecture, lets say about literature, if the children do not understand and do not profit from it at all! The most difficult part is mathematics, because abstract things like numbers and operations are not 26

very much accessible to our children (even if the school syllabus requires these things). She had a colleague doing high level mathematics with the children who didnt know the difference between right and left. She was a good teacher, but not for this school, so she had to leave In fact the evaluation of the quality of education in special schools can be well identified in LACRIMA school. High performance educational skills and abilities that are strongly desired in the mainstream educational system here means normal life skills and independent living abilities that can be obtained with a constant and patient sympathetic communication. One educator who worked under the supervision of a team of Swedish teachers that helped the school training shared the following experience: I once had a student that didnt do anything else in school but played with some cubes. The Swedish consultants told me to be patient and to consider a progress if he arranged the cubes in a certain manner that I indicated. I tried several times and finally he succeeded. I considered this a great progress even if for everybody else this would have been of no importance. Than I started to practice walking on a declined surface for keeping the balance and again he succeeded. Then I designed a tour with chairs and banks, going up and down, and with obstacles to jump over and he enjoyed this very much. I considered it very important that he could finish the tour! Then I visited him at home and I felt very pleased that he, the former non-communicating child helped me to take off my coat in the hallway. Then he took my hand and led me to a coach in the living room. Then he offered me some candies and juice. I was very pleased! I felt accepted in his world and as part of his world and I understood the importance of my work. Another characteristic of this special education that came out of the discussion with teachers is the need for concrete objects and equipment: They need many materials in the classrooms because its hard to talk with the children without showing something or doing something. These children like to make things and they have the patience to do complicated operations. The teachers learn all the time new things and practices that they try to apply when interacting with the pupils.

The Parents We had a discussion with some of the parents who bring their children to LACRIMA School. They were all distressed because of the condition of their sons and daughters. Here are some of the stories that they told us: I am 31 years old and I am a little too sensitive. When I speak about my child I always cry so you have to be patient with me. I had Cristi in 1987, he was healthy. After one month he had some problems and we had to go to a medical clinic. We stayed there for 6 month and after that they told me he has a chromosomal problem, a genetically caused disease that can be explained by a biologic accident. 27

He was smaller and not so developed so I had chosen to enrol him in a special school. After two years they told me he is unable to follow the program and I agreed. But still I didnt want to keep him home without stimulation so I chose LACRIMA. I had him, Mihai, very late, 13 years after my first child. The day after delivery I was told that he was ill. I tried different clinics but everybody told me that nothing could be done for him because he has Landon Down syndrome. We stayed in a city nearby and he couldnt attend the classes, so we had to move here, to buy an apartment to bring him at this school. I am now very pleased: when he came to school he didnt know anything, he couldnt even speak. Now I can count on him, I send him with the shopping list and he comes back with the change. We have a handicap certificate and we didnt try to enrol him in an ordinary school. All the parents seem satisfied with their children coming to this school. They express gratitude toward the school staff for the efforts and dedicated work with their children and for the progress that they achieved. However, some times the parents criticize the fluctuation of the teaching staff: At the beginning they were not very satisfied because each year the teachers changed: they understood that the activity was very difficult and the wages very low, but still they stayed only for one year while the children learned to know them and then they left. The results were not very good at the beginning. Now things are different: the children are very attached to the school. They are pleased to come here and dont want to miss anything. And, because they like it here they are also learning things, mainly because he they are well treated by people. At home they would do nothing hence being isolated. Some of the parents feel sorry about the rejection expressed by people from the community and almost all of them are very worried about the future of their children (when the children will be left alone because of the parents death). One of the parents expressed it like this: We were afraid of the mockery from other children because even now people (children and adults) make jokes about him. I cannot lock him inside, and I cannot bring him to social gatherings because my son is not welcome. I prefer to go with him only where we are both accepted. I have seen some times on the street men and women laughing when they see him. But what if they had a dear person in their family with the same problem?! One time we were at a public show and Mihai was dancing. He always dances when he hears music. He invited a lady to dance who was very angry saying that I should keep him at home because he is ill and not to bring him in public places. I said to her: Dont worry; he is not going to bite you! I wanted to tell her more but I hold back. Still I was angry because she didnt realize that it was not our will to have ill children! But the future is still uncertain: 28

I thank God that Mihai came here, because now he goes alone to the bathroom and he takes care of himself: I dont need anything else, because, you know, others are much worse! I dont know about the future. May be something good will happens for them. But I dont see him working and earning his living. He will be 18 this year but he is still playing with dolls. He is making clothes for the dolls. He speaks with difficulty. I understand him because I know him and I have patience, but othersAs long as I am alive I will take care of him. After I die, I dont know, maybe God will help him. Nowadays, everybody have their own problems. Nobody can take care of mine as a surcharge. I cannot sell my troubles to anyone, dont you see?! The Belgian volunteers LACRIMA has a group of stable friends from Belgium who came to the school first time after the fire in 1998. They are young, enthusiastic and feel the satisfaction of giving a helping hand. They came here because they saw some TV images about Romania and disabled children and they decided to come and help. They heard about LACRIMA, they visited it in 1998 and they considered it a very good project. Because of the fire they decided to help on the rebuilding of the school. They raised money in Belgium. They even organized once a concert in Bruxelles, for the benefit of this rebuilding. They organized some groups, in fact they do this every year, to come here and work for this centre. They bought materials with the money raised and then with these materials they did the building activities and Mr. Szorenyi is coordinating them. They came here each year in groups of 15-16 youngsters of 15-18 years old to work and make new friends. Their goal is to help and to discover a new reality different from what they know back home. They are all excited because the children will have new classrooms and teachers new offices and they will be remembered in their future activities. Every year Mr. Director is telling us We have a new project, and I need your help to make it work! So we are pleased to work in this way and to see the initial project growing constantly in the same framework. What we like here is that we see all the people happy: children and teachers are smiling more and more for each year! The pupils We have here a device that helps us understand better what we are talking and recollects what has been said. Lets see now is it all right with you? OK lets proceed! First you have to tell me tour names, how old are you, in which grade are you and so on. Who wants to begin? My name is Cristian, I am in 9 th grade and I am 17 years old. I am Adriana, I am 20 years old and I am in 11 th grade. I am Ciprian, I am 19 and I am in 10th grade and I am also working in a general store. I am Mihai and I am in 10 th grade, but I dont know how old I am. 29

What are you doing here in school? Group: We are learning and playing with the other kids. Cristian: I am reading, playing and writing. Group: We are also eating here; the food is very good. Mihai: I am working in a general store. I receive food a juices. What are you doing there? Mihai: What I can do! I am also eating here, at home also but also here. I am also going to classes. I am playing with the kids outside, I have toys What toys? I have cars and a Barbie doll. Ciprian: Me and Adriana we are in a group who does pretty things like these (paintings, sewed landscapes, dolls, wall hangings, etc.) Who teaches you to do such nice things? Eva (school instructor) does.

Do you like here at school? Yes. Why? Because it is our school! How are you treated here? All right, we have friends here and we are also playing with dogs. What animals do you have more here? Rabbits, pigeons, chicken, ducksWe have also a lake with fish. Ciprian: The Director is a very kind person, all are very kind. Mihai: I have my best friend here. Cristian do you have friends here? Yes, some. And I have also my brother. I have also some girlfriends. What dont you like here? We like everything. I heard you have been to Poland. What have you done there? We have been on a trip. We stayed there two weeks. 30

Did you enjoy staying there? Yes we have many friends there. We met many lovely girls there. You have also a club here? Yes, we are watching TV there. Even Santa Claus came there! We are also singing and dancing there. And we are doing parties there. You also have a sport hall! Yes, we are doing gymnastics there and playing with the ball. What are you going to do when you will grow old? We shall stay here at school! Cristi: I shall be a taxi driver.

B3. Incidents and conditions The director has also some complaints about the help he receives from the parents: The agreement with parents was that each family should work one week during the school year for each child they send to school (not only the members of the association but also the other parents because the children are coming from all over the county). But with time passing by, the parents didnt come any more. Instead they tried to pay somebody else to take their place and the whole arrangement deteriorated. Today parents do not contribute any more, but they still expect to receive gifts on holydays, sponsor money for their childrens trips and summer camps, etc.) They are happy because their children leave at 8 and come back at 6 and they receive all the financial assistance that they are entitled to. So the parents have only to gain from the school activity, but for parents to volunteer is no longer a very popular activity in BISTRITA. B4. Toward an archaeology of the project The LACRIMA Special School was formally established in 1995. The establishment was initiated by a group of parents but was later approved and is also financed by the local government and organized within the formal educational structure under the Ministry of Education. The director of the school, prof. Szorenyi Nicolae, is himself a parent of a disabled child. He is regarded the founding father of the school, but was employed because of his formal qualifications. All staff is employed by the school authorities.

As a private initiative, being approved as a formal special school, financed by the government must be regarded as a success. Not only did it secure the premises and the finances of the school, but it also ensured the sustainability. However, being a public school established by parents will almost by necessity involve a certain degree of ambiguity and tension. And even in LACRIMA Special School there is a certain tension among staff, reflecting different perspectives on policy and 31

practice. Somewhat simplified, this disagreement could be said to be about how much the school should move away from the traditional modus operandi of special education in Romania. Some of the teachers, especially the younger ones wanted to move the school away from the traditional curriculum, emphasizing practical knowledge, life skills and self determination, allowing the children to develop on their own terms. Other teachers wanted the school to develop more in line with ordinary school, emphasizing curriculum, discipline and order. They complained that since the pupils were allowed to behave as they wished, such as moving around without having to ask for permission, it made it difficult to progress according to any plans and programs. This is not to say that the school was marked by staff conflict. On the contrary, there was a good working atmosphere among the teachers, as well as in the relation between teachers and pupils. The director, having been a strong spokesman for free and individualized forms of education has managed to balance the different approaches, pulling the best out of both of them. However, some teachers did leave the school due to disagreement about pedagogical stile. Still, what characterize the school are first and foremost the good atmosphere, the good relations between pupils and staff and the strong dedication to individualized ways of learning. Worth noticing is also the enrolment policy in which the school accept children that are excluded from other special schools. LACRIMA Special School represent an interesting project also in the sense that it contain this tension between private and public, between voluntarism and professionalism, between social movement and formal organization. Being initiated and established by parents, reflecting a strong vision to create better opportunities for their children, opportunities that they would not have within the existing school system, the school is now a part of the system, supervised and monitored by the general school authorities. The director, being himself a parent of a disabled child represents the link to the initial ideas and visions, and has been a charismatic representative and spokesman for these values within the formal school system. On the other hand, he is deprived many of the means to effectively implement the vision. He commands the material resources, within the limits set by regulations and budgets, but he has no power over the recruitment of staff, being the most important mean to form the content of the school. Lifting the dilemma to more general level, this is probably an important strategic issue in much development work. Provided that one has a clear image of what to accomplish, would the best strategy be to establish a pure and independent model on the outside of the generic structure, to demonstrate and communicate the vision, or would it be better to work from inside, being a part of the structure all from the start, with the expense of having to compromises the original idea? The work done at LACRIMA Special School has probably impacted a great deal on the public school system and it contains a lot of qualities still making it a valuable model in special education. On the other hand, if the director and the parents movement had 32

been in full control of the school, commanding the same amount of resources, it is possible that the school would have been somewhat different from today.

C. CONCLUSION LACRIMA is a very special school among special schools. There are 149 special schools for children with intellectual disabilities in Romania, enrolling 21,799 students as of January 2004. These schools use separate curricula and programs developed by the Ministry of Education to meet the needs of children with various degrees of disabilities. A child is enrolled in special school as a result of the decision made by the local Child Protection Commission, which recommends the course of education and complementary services, such as speech therapy. In Romania, the additional benefits available through the special schools, such as free meals and supplies, create an incentive for disadvantaged families to seek a diagnosis that would place their children in the special education system. The official administrative representatives consider the education available in special schools to be appropriate for students who cannot attend mainstream schools under current conditions, due to severe or profound disabilities, and associated physical disabilities. However, some experts in the field indicate that, in practice, special schools generally accept only children with mild intellectual disabilities. Parents and NGO representatives do not consider the quality of special education to be high, but merely satisfactory. Parents report that the most serious problem in special schools is the teachers lack of adequate training, motivation and concern for working with children with intellectual disabilities. Although there are benefits associated with working in the special educational system, there is also a perception among teachers and society in general that teaching in special school is a lower prestige position, and this perception reduces teachers motivation for working with the children with intellectual disabilities. It is established that LACRIMA Special School is a unique project in many ways. It is one of the very few schools in Romania that accept severely disabled children, special schools included. These are children that would normally be excluded from any forms of education and most often referred to confinement in closed state institutions. It is also one of the few schools established by parents, and even directed by a parent. These were parents of children with severe disabilities who did not want to see their children abandoned. Hence, they were looking for alternative solutions that could create opportunities for their children to develop to the full of their potentials, which would be regarded as a right for every child. LACRIMA Special School is also unique in its pedagogical setup as it challenges the traditional model and curriculum for special schools in Romania. The basic philosophy of the director is that each child is unique and needs stimulations and supports that reflect this uniqueness. And the stimulus and supports must be emotional as well as intellectual. Or, as the director himself puts it: I would like to 33

find for each pupil his sense in life. I found out that these children also need our love maybe more than the others. To be able to provide this the school has developed a multitude of means and efforts, such as colourful and pictorial decorations, well equipped playgrounds, a variety of different animals etc. Since the school even provides respite care, meaning that children are at school from eight in the morning till six in the afternoon, children even have a lot of time to utilize this resources.

34

ARNSBERG CENTRE FOR REHABILITATION, ALBA IULIA

Introduction The ARNSBERG project, being a centre for rehabilitation is first and foremost aiming at improving the physical, emotional and intellectual functioning of disabled children within its region of operation. The focus of the project is first and foremost on the impairments of children, and not so much on the social aspects of disability. Even though this might be regarded as a rather limited orientation, it is just as much an important aspect and an aspect which has most often been poorly addressed for this group of children in Romania. ARNSBERG centre for rehabilitation is a modern, well equipped centre with a highly motivated staff dedicated to provide the best services possible to each individual child, within its scope of operation. As such, ARNSBERG centre for rehabilitation is a unique project within the Romanian context, not only because of its material and professional qualities but also because of the ways in which children and parents alike are met and treated on an individual base.

A. DESCRIPTION OF THE PROJECT A1. Physical and organizational structure ALBA IULIA is the capital of a department of about 400 000 inhabitants, geographically situated in the middle of the country. It is a small town significant for the Romanian modern history (Unification of the country 1st December 1918). The recent transition to a new society contributed to the economic decline of the city, something which the exterior aspects of the big historical buildings in the centre of town clearly witness about. In contrast to this, the modern lines of the ARNSBERG CENTRE suggest a new perspective. The centre is placed inside a big yard with other worn out buildings used for social purposes (a former home for abandoned children, a department of the local service for child protection and a crisis centre for minors). The building is conceived in a circular mode, the central part being a sport hall with transparent walls, so that everybody can see the rehabilitation exercises done there. On the corridors one can see parents with children waiting their turn to different services. We found that every disabled child has a specific program, for 2-3 times a week, with 3 6 procedures planned in advance, so that the capacity of the centre is reasonably utilized and the beneficiaries dont loose time waiting. The basement contains the kitchen and the dining room for about 50 people, the laundry and also some rehabilitation services, like electrical therapy, hydro therapy and wax therapy. It also contains the bureau of social workers, responsible for the family information and assistance. The first floor has a speech therapy centre, the cabinets for psychology and psychiatric 35

rehabilitation, a relaxation centre and a small educational cabinet. All the facilities have nice furniture, computers for data bases and big windows; the environment is very friendly and the walls are decorated with childrens drawings and toys. The entrance is accessible for persons with mobility impairments and the building has three elevators and leaning surfaces. The people working here are young and friendly; all of them have higher degrees or they are still studying at the local university or the neighbour university in Cluj. The centre keeps detailed records of all its clients, which are extensively utilized in the case conferences held periodically. We found that the initial individual plan for each child is developed by a doctor and the professionals regularly report on the progress made. The professionals have no uniforms except for the physical rehabilitation units where they wear protection clothes. A2. Aims and activities The service system is divided into three units: The physical services: electrotherapy, hydrotherapy, physical exercises, kinetic-therapy and body massage under the supervision of a rehabilitation doctor. The other services: speech therapy, ergo-therapy, psycho-therapy, educational therapy (psycho-pedagogy) under the supervision of a neuropsychiatric doctor. The social assistance service: social workers working with the family and the legal authorities. The beneficiaries are: Disabled children from the child protection system coming from residential centres or from foster families; Disabled children from the region brought together with their parents from the rural villages in the mountains near by area with the centres vehicle. Disabled children from the local community accompanied by their parents. Children are coming to the centre with their parents, foster parents or educators, the objective being their empowerment to perform rehabilitation activities outside the centre interventions. Every beneficiary is coming with a file containing a referral note from a medical service, a social enquiry, and a demand for services. Every child has a treatment plan developed by the evaluation team as part of the assessment process. There are also intermediate and final evaluations for each child from each service that takes part in the rehabilitation process. The general plan includes all the procedures and the day planning for each beneficiary. But not all the procedures last the same amount of time (for instance electrotherapy 36

lasts 10 minutes for two children while the speech therapy session is 40 minutes for each. Thats why the nurses specialized in hydrotherapy, electrotherapy, and wax therapy are directed to assisting other professionals or doing other activities like medical examinations or medical registration. It is difficult to get medical staff to work in the centre due to low wages. This is also true for the other professionals (psychologists, social workers and other therapists). The solution seems to be to employ very young professionals who have just graduated. But unfortunately, many of them leave after getting some experience either to private practice or to better paid positions in Romania or abroad (Canada, United Kingdom, USA). An innovative solution was found for the electro-therapy, a field with very few professionals on the market. The director organized a training program for the medical nurses already employed and they got new competences performing different activities. There are also social activities such as camping, shows and theatre watching, parties and many other activities that parents can take part in together with their disabled children. A3. Resources and alliances SICOE (The Former Manager) The former director Mr. DAN SICOE is a medical doctor specialized in paediatric treatment and who followed abroad much training in rehabilitation techniques. In a different political context he was the director of the local child protection agency, the agency that is currently coordinating this centre. On the premise of Arnsberg it used to be a centre for abandoned children, but being situated in the centre of the town, with important people living near by, it was surrounded by a big wall. His first decision as director of the centre was to demolish this wall, so that the children could see outside and they could be seen from outside. The centre is not very high. It consists of ground level, first floor and a basement, this due to accessibility requirements (when serving as a doctor in Libya Mr. Sicoe had observed the benefit of the ambulances having free access to the surgery block). Mr. Sicoe began as the director of a Leagan (residential centre for children under 5 years) located in the same yard and still existing as building (now there are 2 residential modules for rehabilitation of children with severe associated disabilities). One of his first ideas was to open the institution (which was closed and inaccessible). He organized The Day of Open Gates and Charity Shows, etc. He let people come in and see; he had a good collaboration with newspapers and local TV: I wanted people to see how children are, how the conditions are, what services are provided, what the good elements are but also 37

what problems we have (transparent institution!). He remembered his reaction of curiosity from before, when he passed near by this institution and heard children crying. In exchange he had good relationships with foreigners (from France, Great Britain, Germany, and other countries) who became stable friends of him and donors of his institution. It was organizations such as Medicines sans Frontiers, Feed the Children and Touch Therapy (USA). They provided trainings and diplomas but they also made an external evaluation of the institution. From these contacts we learned that if you have problems and you analyze them objectively there are maybe chances to solve them, but if you dont admit that you have problems you have no chance. He still has a professional (medical) perspective about intervention (rehabilitation of patients, rather than normalization and social integration) stressing the importance of good medical capacity of the institution for the wellbeing of the beneficiaries (this seems to be the general perspective in the county). He is permanently rebelling against higher authority! He criticizes bureaucracy saying that there are too many useless and badly intended and badly informed politicians and too few real professionals. He criticizes the actual system of child protection, which he considers too centralized and disinterested in the local conditions in the field. He thinks that the top executives are taking the most important decisions hiding under formulas like the superior interest of the child. He also criticizes the foster parents system (which has to be only temporary care, he says, but people seem to forget this). Even though he used to be the director of the child protection agency at the county level he was not satisfied by its methods. He states: There are good projects in Romania but authorities do not see their benefits. He also says that the beneficiaries themselves cannot evaluate the services received in accordance with their needs, mainly because they are not fully aware of their needs. This centre has its limits as conception and staff. The challenge is to create a maximum of efficiency under the given conditions, and this is exactly what he tried to obtain.

A4. Qualities and characteristics Some key factors of success revealed by the staff: Multidisciplinary team, with good cooperation and communication skills. Indeed, this seems to be the strongest point of this high cooperative project. 38

 Interest from the specialists, and dedication toward the service users. What is to be noted also is the enthusiasm of the staff in general and even the pride about belonging to this organization. Good management, meaning care about the fulfilment of the organizational objectives but also care about the work satisfaction of the staff. Open staff and management (open minds and open souls) - says a member of the local government. It is the best place to be for children with problems (they are very advanced in interventions). Addressing disability requires a lot of means; treatment is usually for the rich people, but this centre treats the poor too, in fact mainly the poor - states a social service employee of the city hall in ALBA IULIA. Well equipped centre (devices of the last generation) with good rehabilitation techniques. Some problems (a few also revealed by the staff): Bureaucracy (too many steps and forms to fill to access the centre); Training of staff (they would like to attend more training sessions); Too low salary considering the complexity of the obligations; Too few professionals considering the increasing number of beneficiaries; The local authorities do not appreciate enough their activity; in fact this is a more general problem in the Romanian context; Lack of Internet facility in the offices to check the new developments in the field; Eventually a too strong belief in medical interventions and rehabilitation techniques at the expenses of a more social and empowering approach (like too little efforts to establish contacts with the home communities of beneficiaries).

B. HOW THE PROJECT BECAME WHAT IT IS? B1. A quick biography This is a centre who delivers services to the entire region. We found that people were coming from far away villages; they look for social, psychological and physical rehabilitation support. The centres idea occurred at the 30th anniversary of city of ARNSBERG (Germany) and city of Alba Iulia twinning, when German officials offered their help in solving the most important social needs of the Romanians in the child protection area of interest. The Romanian analyze showed an increased number of disabled children in the region without any modern service or assistance. So, initially, the centre was intended to help 39

the disabled children enrolled in the child protection system but then the local authorities thought of a community based service centre for the rehabilitation of disabled children from the entire region. The project was from the beginning co-financed by the Romanian and German local authorities. The building is too big for the money that the German partner donated (400, 000 DM). The centre was finished through financial help from the World Bank who has sponsored many big projects in Romania. The ancient Leagan (former institution for abandoned children) located in the same yard as Arnsberg centre, became a residential centre for children with severe disabilities. The actual centre is a community centre for the whole region organized under the system for child protection. Now there is a day services unit and a residential unit (but only temporarily for 3-4 weeks, as long as the rehabilitation cycle lasts) for children living far away in the mountain villages. The beneficiaries come 4-5 times a year, so that the 200 beneficiaries are in fact more than 800 during the whole year. This is important because the number of staff employed depends on it. Their wages are paid by the local authorities who are quite inflexible and have very strict rules about these numbers (which are legally established).

B2. Agents and ideas ARNSBERG centre employees Alexandra (social worker), 8 years experience; Maria (medical employee), 28 years experience; Delia (paediatrician), 10 years experience; Ioana (educator), 10 years experience. All staff at Arnsberg are well qualified with University degrees obtained in the near by or local institutions, and most of them have been working in the centre since its opening. Everybody is looking forward to obtain better qualifications and more expertise through more training, supervision or peer counselling. Why working here, with disabilities? Its a normal working place even if it is the first centre of this kind in our county. The choice of these services and of building such a centre is due to the obvious need for special care for children with this kind of problems. We believe and we are convinced that we are doing well for these children and we have tried hard to organize and to get the right equipment for the different types of therapy requested. It was difficult because we didnt have a model to guide 40

us in organizing the place, getting the right technical devices and decorating the halls and the cabinets and so on. They got help from the local community but first of all from the brother city ARNSBERG (Germany) who had relationships with ALBA IULIA city even before the Romanian Revolution. Of course, to finalize the project they also needed some help from the World Bank but finally all went well and today they have the centre: We had a very nice opening ceremony with participants from the central and local authorities, with professionals from different fields, children and families with disabilities; everybody was very pleased when this centre was opened. We hope that in the future the centre will be bigger and better; we have been visiting other similar centres and we brought home new ideas, new practices and technologies. We have also got information from Internet and even from the parents who have told us about how their children were treated in other centres. Some of the staff have experience from the former residential centre for abandoned children where they use to work (many of these children had disabilities). The employees work very well together because they are all young and enthusiastic and they form a friendly atmosphere; this is very important when you work in an emotionally difficult environment. The centre is well equipped and modern and the work conditions are excellent (they have almost everything they need). The employees would like more support from the local authorities (material and strategic). The employees also frequently take the children into town for shopping activities, playing, zoo or trips to other cities. (Always they eat at Mc Donalds). During these trips they observed some defensive attitude from people on the streets towards the disabled children (sometimes even their own children have this attitudes when they are coming along). Also in the mainstream schools where their beneficiaries are integrated one can observe these reticent behaviours coming from peers and from teachers as well. Even some of the parents of beneficiaries have problems relating in the right way with their children and they need directions. The centre had an important impact in the rehabilitation process of children with disabilities because of the professionals and specific services available.

The beneficiaries Maria (14 years, residential care, spastic tetra paresis, attends elementary school). How long have you been here? Since long! Is this your room? Yes, but there is another child here. Is there your bed? Yes. 41

What are you doing here? When I get homework to write I write, when I have to read, I read. And what else are you doing? I am playing with the children and with the ball. You have a lot of toys Three dolls are mine and the rest are from here. Do you have any friends here? No, because I dont want to. But I have friends at school. It is difficult at school. At the beginning it took me a lot before writing the word that teacher wrote on the blackboard. She used to ask me Are you asleep? Me, I was reading the word but it didnt match. Finally the teacher said to me Till I will be back from the next classroom you will know this word by heart! My teacher is always in a hurry, but I cannot keep her rhythm, so I tell her not to be in such a hurry. Do you like here? Sometimes yes, sometimes no! From time to time I became home sick, I want to see my two sisters and my brother. They are coming here to visit me and they promised to take me home. The lady that takes care of you is OK? Yes, I love ICA and she loves us. The food is it OK? Yes, very good, but I dont eat all the times (because there are things that I dont like: rice cake or polenta). Do you get along well with the children? Yes, but sometimes we fight about toys! The boys are good, but the girls are naughty! Are you getting out somewhere? Yes we go on trips; maybe today we shall go (Maria and other children are going on a regular basis at childrens hospital Grigore Alexandrescu in Bucharest where they receive surgery rehabilitation treatment) . We play in the yard with the facilities. What would you like to be when old? I dont know. Maybe a physician The children in residential care that we interviewed expressed their acceptance of the centres conditions (treatment facilities, food and staff) but showed their concern about the surgeons in Bucharest. They looked well cared, well dressed, with clean sheets in their beds, and clean rooms and toilets. They were optimistic about their future rehabilitation and got along well with peers and medical staff. The Parents A mother from a mountain village with a one and a half year old child with a mouth dysfunction was in the childrens hospital and then was referred to the centre. She is pleased with the professionals treatment and the general 42

conditions. She is also pleased that she has not to pay for the treatment, only the child state allowance is taken by the centre since the child is kept here. She is coming every month to visit her baby and she watches his evolution (every six months the child is under surgery). She would like to take him home but she states that she doesnt have the right conditions (she lives in her sick parents house, sleeping all in the same room). Another mother from a far away mountain village is here since three weeks because of her one year old daughters neurological problems (the diagnosis is still missing). She is pleased with the general conditions, her child is well treated. She is missing her husband and her other child, a three years old boy. The treatment consists of gymnastics and general stimulation and the mother participates actively trying to learn the procedures for home use. She is confused about the different opinions of different physicians she has consulted but is now very pleased about the good evolution of her daughter. She is especially satisfied with the centres professionals, very kind and efficient and she believes that they like their work. She had to make a brake in the treatment last week and she was not happy; but the staff explained that there are also some other children that have to be treated and she agreed. Once she tried the same treatment in a centre in a different town, but at Arnsberg, she says, the general conditions are far better. A father who had been to the same centre as the mother above stated that the main difference is that in ALBA IULIA the staff is young and interested in what they do while in that other centre the staff is worn out. Here there are toys in the treatment rooms and 6 years old children are motivated because if they work well they can afterwards play with the toy they want. B3. Incidents and conditions Mr. CHIRILA, the Director of Social Work and Child Protection County Direction The director considers our study an external evaluation and thats why he would have wished us to discuss with him first, so that he could have given some clues for the analysis. He has plans for the centre, one being changing members of staff. He would like to replace the manager with the psychiatrist of the centre that he consider more qualified for the rehabilitation activities. He blames the actual manager for the fact that some professionals left the centre for better positions in Romania or abroad. He states that he would like to support the trainings and conference participation for the staff of ARNSBERG centre to help them improve professionally. He insisted that the treatment plan for the beneficiaries should be done by the assessment team and not by a single person even if well qualified. He states that his institution (The County Direction for Social Work) has a budget of about 43

280 billion a year, for 37 centres (ARNSBERG being one of them) and that the funds are distributed according to the efficiency of these centres and to what extent they fulfil national requirements and standards. About decentralization of the institutions he underlines the difference between decentralization and deconcentration (he would let the managers of different services manage in a profit oriented way). In his opinion, decentralization only concerns from which level of authority money are distributed, while de-concentration on the other hand has to do with transferring the decision in the directions of the market economy, transferring the authority while increasing the responsibility. He also criticizes the managers initiative to train nurses for electro-therapy saying that this activity implies knowledge and responsibility and the qualification has to be authorised by an accredited institution. In fact his main reproaches for the centre seem to be: The number too high of medium qualified medical staff; The number too low of children under treatment in the perspective of the funds spent; A lack of cooperation between the two doctors responsible for the two areas of intervention (absence of a real evaluation team); The amount of funds spent for socialization activities. At our second visit to the centre we found a new director Miss LAZEA, the former coordinator of the department for psycho-pedagogic recuperation. She is qualified as a psychiatrist and she is one of the few professionals of its kind in the county. For this reason she is also involved in the activities of other institutions and commissions. For managerial purposes she is helped at the centre by a young administrator, a specialist in management. We also found some changes in the activities of the centre: The centre is now using its maximal capacity having about 200 service users per month. The rehabilitation process lasts one month at the most for each session, with the possibility of new sessions if necessary. The service users are carefully assessed at the beginning, the individual intervention plan being the result of the case conference. There are ongoing evaluations of the different professionals according to the initial objectives, describing the individual evolution. At the end of the rehabilitation session, the service user gets a final evaluation and further recommendations from the members of the multidisciplinary team. The workload of the professionals is now carefully observed (they have to intervene in at least 8 cases a day for their 8 daily hours of work and they have to write also their evaluations in the beneficiary file). The professionals are now working the whole day long, from 8 in the morning till 8 in the evening, in two shifts. There is a new physician responsible of the physical recuperation department, with a daily program and a qualified paediatrician. 44

The residential modules were now used properly at their maximal capacity: there are three modules of five places each (five children accompanied by their mothers) very well equipped with modern living utilities, and also two modules for two mothers with young babies each with the same conditions. The users of these facilities are families living at such a distance or having such living conditions that otherwise would make it impossible for them to attend the services of the centre on a daily basis. The confidentiality is now more carefully observed, the current treatment plan being no longer exposed at the entrance as it used to be.

B4. Toward an archaeology of the project The ARNSBERG project, being a centre for rehabilitation is first and foremost aiming at improving the physical, emotional and intellectual functioning of disabled children within its region of operation. For that reason, the centre could be said to focus primarily on impairments, and not so much on disabilities. Impairment is commonly referred to as the loss of, injury to or abnormality of a body part or of one of the bodys psychological, physiological or biological functions (Normann at al 2004). Disability, on the other hand, first and foremost refers to the persons relation to a given environment. Disability literature often distinguishes between a week and a strong environmental concept. In the week version, most often found in national policies and academic literature, disability usually refer to the gap or disparity between a persons reduced level of functioning and the demands of the environment or society. From the perspective of the social model of disabilities, reflecting a strong environmental perspective, disability is defined as discrimination and repression; not as a result of impairment but as a result of how the society is organized. Thus, focusing almost solely on impairment is a rather limited scope even for a rehabilitation centre, especially within the context of this project. Still, it is just as much an important aspect and an aspect which has most often been poorly addressed for this group of children in Romania. ARNSBERG centre for rehabilitation is a modern, well equipped centre with a highly motivated staff dedicated to provide the best services possible to each individual child, within its scope of operation. As such, ARNSBERG centre for rehabilitation is a unique project within the Romanian context, not only because of its material and professional qualities but also because of the ways in which children and parents alike are met and treated on an individual bases. What our research team observed was also the new perspectives that socially oriented employees brought to their medical colleagues. These perspectives reflected more holistic ways of meeting disabled children and their parents, 45

including not only individual interventions but also the relation to other arenas such as school, family and community. It also challenges the traditional powerimbalance between professionals and beneficiaries introducing the notion of partnership into the treatment paradigm. But the medical staff also holds a certain pride in their professionalism and their dedication to the service users, carefully evaluating the progress and trying to keep up the standards of a very well equipped institution. In fact we believe that what makes this project unique and interesting, being a centre for rehabilitation is this synthesis of two different perspectives. Medical orientation of the care of disabled children Disabled children in Romania still tend to be treated as though they were sick. Doctors control the certification process, and nearly all residential institutions are run by doctors. Very many children in residential placements are on constant medication. Doctors, rather than other professionals, such as social workers, speech therapists, psychologists, dominate the care and assessment of children's needs. Assessment of children with intellectual disabilities traditionally included the concept of the 'irrecoverable' child, a concept devised and applied by doctors. These children were denied the right to education, and effectively disposed of in long-term institutions as incapable of learning or benefiting from an investment of care and education. Even though this concept is no longer officially applied, it still strongly informs the thinking amongst those working with children with intellectual disabilities. And 'defectology' is still taught in university courses as part of the training for professionals working with disabled children. The medical professions remain powerful in this field and appear to be deeply resistant to change. These pervasive attitudes are irreconcilable with a commitment to promoting and protecting the best interests of children The perception continues to be dominated by the medical model disability derives only from the individual in question, and it is often regarded as a disease. Disability is also perceived as a personal tragedy - the model of mercy (charitable-philanthropic) often implying a diminished citizenship. The largely spread conception is that people with disabilities are limited people, lacking the ability to learn and to participate ordinary events; consequently they are excluded and regarded as dependent recipients of other peoples mercy. Often people with disabilities are appreciated only through their social productivity. Other frequent reactions are indifference, contempt, or fear for the problem of disability. ARNSBERG centre, being a medically oriented institution, has to a large extent been able to brake this traditional medical perception of disability, and instead introduced a more modern and sympathetic perspective treating disabled children with the same professionalism and respect as any other. ARNSBERG centre is a good example of a modern Romanian institution where residential care is very limited and very comfortable, were friendly attitudes are replacing 46

formal and distant treatment of service users. In fact we couldnt find any institution-originated misbehave towards the children benefiting from this centre and we kept this as an example of good practices in the field. We finally concluded that ARNSBERG CENTRE is a good model (even perfectible) of a PUBLIC SERVICE, which appears even innovative in the Romanian context. The rehabilitation is carried out according to individually designed plans, which is periodically evaluated and there is a permanent opening toward the society.

D. CONCLUSION What are the factors that assure the success of this project? 1. Strong and firm management, with clear objectives and vision that help the planning of all activities: The manager is also flexible and has broad orientation even though he is not specialized in every field of intervention. In fact the manager planned the design and the organization of the centre and knows every member of the staff. He/she is helping everybody in obtaining better professional skills; he knows the possibilities and limits of everybody and can organize the activity according to this information. The team of professionals can assess and solve most of the specific needs of the beneficiaries. 2. Staff attitudes toward beneficiaries: They are all concerned about the success of different therapies and have a parent like attitude toward children. They call them by their names and are very friendly with them and their family. They enjoy what they are doing; they are proud of their work and are constantly looking for better ways of doing things. They dont need control but support from their manager. They treat poor people with the same dedication then the rich families. The team members are young and willing to improve professionally. They cooperate well and have a friendly attitude toward each other; this situation could eventually change over time, but now its a strong point of this institution. Even if it is a state run institution, this centre shows how non-formal and friendly attitudes and behaviours can emerge and develop for the best interest of the service users. 3. Keeping promises with the partners (foreign and local). The foreign donors are impressed by the fact that what is decided is achieved and nothing is spent for the satisfaction of personal interests of staff members. Such a large, well equipped and well functioning centre cannot work well without the dedication of the people working there. The centre has a medical orientation but the social inclusion perspective is also clearly present and permanently developing. 4. The strong control from the local authorities is the one that keep people on the task and the money on the initial destination. Other 47

similar institutions have shown that a more tolerant attitude from the local authorities have led to an increased autonomy by the manager who began to put his own interests beyond the interest of the institution. So, in a paradox way, the tensions between the manager and local authorities have had a positive impact on the development and functioning of the ARNSBERG centre. 5. This centre responds to the needs of a community with a specific geographical distribution (isolated and poor communities in the mountains where disabled people were condemned to social exclusion). 6. The problems of children with disabilities are approached in the family perspective and not with the patient philosophy. The family is considered a partner in the rehabilitation process. 7. Another strong point developing fast (in progress during our study period) is the growing will to cooperate with the social and educational services already existing at the community level.

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PENTRU VOI CENTRE FROM TIMISOARA Introduction From the three projects selected for this study, PENTRU VOI was the easiest choice for our research team. It is one of the best day centres for adults with intellectual disabilities in Romania, with international recognition. It was established by a parent association and is currently headed by a parent. PENTRU VOI has a diversified list of services for persons with intellectual disabilities. It is also one of the best Romanian examples of public private partnership, and plays an important role in the national disability movement.

A. DESCRIPTION OF THE PROJECT A1. Physical and organizational structure PENTRU VOI centre is located on the western side of TIMISOARA, not far from the city boarders, just in front of a church and near a secondary school. The neighbourhood has many social services facilities. The house is modern looking and appears to be new and well maintained. It has a small yard, where beneficiaries and staff are spending their pauses during the warm days of the year and where the busses which daily transport beneficiaries to and fro the centre are parked. To enter the building you must ring the bell. The door is usually opened by a young man who asks you where you want to go and who also guides you to the department or person that you want to see (one may find later that this person is one of the service-users, like the guy answering the phone, the cleaning ladies or the cooking assistants). The centre also operates services located in other parts of the city, such as: The residential service DINA, an apartment located in a suburb just outside the city centre of TIMISOARA. It is a semi-independent apartment with eight residents who are assisted by a group leader between 16.00 - 8.00 hours on working days and all the day in the week-ends. During working hours some of the residents are at the day center while others have regular jobs. DINU house, located in a village called SACALAZ, ten kilometres away from TIMISOARA. Some of the service users living here are working in the bakery which produces bread for the day centre (80 service users have breakfast and lunch every working day) and for the local inhabitants of the village. They also have agricultural activities in the garden and some have regular jobs. 49

 LAURA is a three rooms apartment offering independent living opportunities for three young women with intellectual disabilities, previously living in institutions. They were trained in DINA house and at present they face the challenges of "on their own feet" life, each of them having a regular job.

The Team Executive director: LAILA ONU (herself parent of a daughter with intellectual disabilities) Day Center, workshops, inclusive employment 12 trainers, 1 job seeker. Residential services 9 pedagogues, 2 intend ants. Multi - disciplinary team doctor, 2 psychologists, social worker, psychiatrist. Accountancy and administration 12 persons. Public relations and office management - 2 persons. A2. Aims and activities In Timisoara there are five different services for children with intellectual disabilities, serving approx. 600 children. The only available service for adults with intellectual disabilities is PENTRU VOI centre, founded in 1997 and financed by the local authority in a public- private partnership. Foundation PENTRU VOI has over the last 8 years developed different types of community based services for 125 adults with intellectual and associated disabilities. The scope of services includes: 1. Day Services a) Workshops: Copy centre Tailoring and Handicraft Work based on contract: packing. Administrative / gardening Bakery (three service users are hired in the bakery) social enterprise b) Supported employment - job coach for 21 persons who already have a job; vocational profile, job seeking and vocational training for 50 youngsters c) Day centre: three activity groups for persons with severe disabilities and / or challenging behaviour. 50

2. Residential services DINA group home for eight youngsters coming from institutions or disadvantaged families DINU group home for six youngsters coming from institutions or disadvantaged families, employed on the free labour market or working in the bakery workshop LAURA independent living facility for three young women coming from institutions that have a job Network of social houses a new project aiming at supporting 5 youngsters coming from the group homes to move forward to independent living 3. Respite services services providing support and accompaniment to adults with intellectual disabilities and/or challenging behaviour. The aim of these services is to give some rest and space to the families, to free them for a certain moment of time, in order to prevent their frustration and loneliness. Support and accompaniment in-home, centred based during the afternoon, in public locations, during the summer school. On-going support in identifying the respite need and finding solutions to the families needs of respite Crisis centre for emergency situations, open 24 hours a day, seven days a week. Two persons can be hosted there at the same time 4. Community support Family support and counselling - support group for parents and families, material support for families with financial difficulties Social life and leisure - annual summer school, PENTRU VOI Club (disco, contests, games, birthdays, anniversaries) Social accompaniment support and counselling in dealing with the social, health, education and public transportation systems 5. Advocacy and Self-advocacy participation for self advocates in national and international conferences, summer schools for self advocates, on-going support for 80 self advocates through trainings, seminars, etc. 6. Training and publishing as resource centre and model of excellence for Central and Eastern Europe, PENTRU VOI provides training, organizes seminars and national and international conferences. They also translate, publish and distribute brochures, manuals, and up-to-date information from the disability field on national level. 51

A3. Resources and alliances Since April 2004 PENTRU VOI Foundation is accredited according to Government Decision 1176/2003 - as social services provider, by the Ministry of Labour and Social Affairs, through the National Authority for Persons with Handicap. The public-private partnership is to be observed when its funding sources are analyzed. In fact the Foundation (private) is taking care of the main building and daily transportation, the main donors being: Friends of Speranta Foundation, The Netherlands Co-operating Netherlands Foundations for Central and Eastern Europe SHIA, Sweden WACR, The Netherlands Rotary Elst, Rotary Timi oara and Rotary International Foundation Open Society Institute, Budapest The daily activities of the institution are financed by public agencies, and staff wages, functional costs and maintenance are supported by: Town hall Timi oara (Local Council) National Authority for Persons with Handicap These partners are working well together under the same objective of providing and developing community services for adults with intellectual disabilities from TIMISOARA. The foreign donors intervene when there are major needs of the centre (like the initial building, transportation means or developing a new service in a new building) while the local donors are supporting the working expenses (like wages, daily supplies, etc.). Its a good example of public private partnership, which is rather rare in a Romanian context. A4. Qualities and characteristics Accounts for the benefits of PENTRU VOI are easily obtained, especially if one listens to the stories told by parents. Here are some examples: For Sandu K. the results were amazing even if not spectacular for outsiders. At home he couldnt sit quietly even when he ate; here he is sitting on his chair. He is now participating in the labour division in his group doing light vocational activities for the first time in his life. Even now one can see him walking in the yard with another boy, hand in hand, without any sign of violence. At home his behaviour didnt change much. What seems to count is the atmosphere around him; here is an experienced team and this counts a lot. At home I am alone because my husband is very nervous and prefers to do anything else but to help me with Sandu said his mother. In fact at home Sandu is kept inside all the time because of his violent behaviour. His only outside world is the centre. Now he behaves much better even at home. 52

Before he came here, his mother was considering the alternative of a psychiatric establishment because of his aggressive behaviour. She recalled that he couldnt go by tram because Sandu was panicked when he lost balance. He always wanted to sit on the nearest chair and when it was occupied he attacked the person sitting there and people didnt understand. Now she gets some breathing space when Sandu is in the centre. Florian has good relationship with his family (he has a younger brother and a loving father) but he is very shy and he doesnt have friends or relationship with the neighbours. He had some problems with the other children, but now the sad situation is that grownup people from our neighbourhood do not accept us because of Florian. Our family is somehow isolated and the centre is our stable social partner. For Remus the best thing with coming to the centre is that he can be with his peers. Without the centre he wouldnt have many social contacts because at home he doesnt have anybody but his family. All the parents are pleased that their sons and daughters are taken from home in the morning and brought home in the afternoon by the centres new buses. They feel secure and they are released knowing that their loved ones are having a good time during the day and that they are doing pleasant and useful activities. They feel grateful that their children can have parties and summer camps and trips and that they can go out for pizzas with their group. They feel that their earlier so lonely and socially excluded sons and daughters are now belonging to society. And they feel grateful that they themselves have time to do other things while their children are at the centre. All the parents expressed their gratitude for the energy and dedicated behaviour of the director LAILA ONU; everybody praised her capacity to fight for a cause and her managerial abilities (she always find the right person for a working place and can stimulate everybody to do his job). Everybody seemed pleased with the staff of the centre including rehabilitation professionals, bus drivers and cooks. Why is PENTRU VOI centre an example of good practices and what are its most successful elements? No doubt that the key issue is a radical shift in the perception of and acting towards people with intellectual disabilities, compared to previous or other present services in the country. The change of paradigm is toward the inclusive services that were demonstrated to work even in Romania. The vision, philosophy and values are characterized by respect toward service users and their families, empathy and unconditional support without making demands or judgments (the prejudice that the professional is the source of wisdom while the family is ignorant!). The values of PENTRU VOI are: The respect for each persons dignity; 53

 Self-determination; Equality in spite of differences; The ethics of solidarity. The best expression of this new attitude is given by the manager: I had the idea that by doing this activity I was implicitly helping my daughter. And I regarded all the time the beneficiaries of the centre as my children, or rather; I thought all the time that it could have been my child and what could I do if it was my child And I tried to transmit this attitude to the staff, for them to treat each case not only with cold professionalism but to put some of their soul in itIt built the vision and philosophy of our centre and it became our strength. B: HOW THE PROJECT BECAME WHAT IT IS? B1. A quick biography As some parents revealed during the interviews, it all started in 1990, and it started with the parents concerned about the fate of their disabled children who received services from the Neuro-Psychiatric Infantile Clinic in Timisoara. A lot of help and support from foreign organizations were directed to that clinic and the medical staff redirected the benefits toward parents. During that period the idea of a parent association emerged, as a result of foreign partners requirements, and everybody seemed to support it; the parents because they looked for better service solutions for their children and thus wanted to influence the appearance and functioning of the services; the psychiatrists because they were looking for an alternative to the bureaucratic and rigid institutions they were working in; and the foreign organizations because they wanted to implement their models in Romania. It is true that there were some misunderstandings and conflicts between the parties involved (manly the self sufficiency of the medical model versus the legitimate worries of the parents about the future social inclusion of their children), but the result was salutary: A new association was created. Forming associations was a big thing at that time. Before 1990 we had only 3 associations in Romania; a national association for blind people, a national association for physically impaired and a national association for mutual help of retired people. So, finally, in April 1990 the parents organization was created under the name SPERANTA (HOPE) Society. First, four parents established an initiative group that wrote a constitutive act, and then they started to gather the 21 members requested by the law (in fact the association started with 25 parents and some other members). Laila Onu was elected the first president because, as she herself stated I was highly motivated because of the interest in the fate of my 4 years old disabled daughter, but also because I knew English which gave me access to foreign literature and also permitted me to open and keep open the contacts with foreign support organizations. Practically, the organization needed a lot of support because they had to meet in a small room of the Neuro-Psychiatry Clinic, but they 54

were all very enthusiastic and optimistic (all of us were that time) and all of them were determined to fight for a better support system for their children. In August 1990, three of the parents were invited to Holland to visit the system of services there, and that made them believe that a similar system would be possible to develop even in Romania. In fact all the parents in the association had a clear objective: To avoid the institutionalization of their children in residential hospitals or in special schools by creating alternative services. They had to fight against the resistance of the Romanian system that didnt want to change but also with the attitudes of the majority population that didnt see any need for better treatment of lower gifted citizens. The first task was to find a building; an objective fulfilled with help from the president of the county council. The building was empty at that time and was attributed to Speranta society without any legal forms (even today it lacks a formal contract). Here, two projects were developed: A day care centre for 60 children with different disabilities (mainly intellectual) in 1992. The centre is still operating under the name The Long Bridge, now with about 100 beneficiaries; and in 1993 a habilitation centre for young people with disabilities from Timisoara and Timis County, now Centre for Special Education Speranta with about 300 beneficiaries. The local Inspectorate for People with Handicap was in favour of these initiatives even if they tried to control the selection of the managers. In fact, the local authorities were very helpful in supporting these initiatives (the Scholar Inspectorate is now supporting the Centre for Special Education and the City Council from Timisoara is supporting the Day Care Centre; according to actual legislation both centres will be funded by the local authorities). These centres are both very innovative projects. They have managed to attract a lot of young professionals and also the interests from foreign donors. There were also many problems in the beginning, concerning management, the internal coordination of the association, the relation to foreign donors and the involvement from local authorities, but the parents association managed to overcome all these difficulties, to the benefit of the people served. Some of them became integrated in ordinary schools. The local authorities were proud of having such modern initiatives in their city, and the foreign donors were pleased by the results of their support. The centres were strictly dedicated to children up to 18 years. As time passed by, the children grew older and eventually reached the age when they had to leave the system. In fact, the managers broke the rules and let some of the adults stay because of intense requests from the parents. In the end, the pressure from parents determined the association to develop a new project: a day centre for adults with intellectual disabilities or associated disabilities. This initiative came into life in 1997 and became the centre PENTRU VOI. B2. Agents and ideas The employees 55

Rodica , principal instructor for ergo therapy, has worked in the centre since its opening in 1997. She used to work in an electronic factory which was restructured. She followed a social worker reconverting program and than got this job. I am working with the groups helping them to finish the products, assuring the quality of the products, their commercial aspect. I am also doing music-therapy, which I learned through a training facilitated by our foreign partners. I was anxious at the beginning because I didnt know how it is to work with intellectually disabled persons, even if I had social work training. I started as a teacher for vocational activities and I had activities (meetings and discussions) with parents. But in spite of my fears I had a very good relationship with beneficiaries from the very beginning, even with those with severe autism. I did a tour of all the activities in the workshops: I did tailoring, sewing, painting, I made envelopes and I did other types of paperwork. It is important to know all the beneficiaries and all the activities in the centre in case that one of the employees cannot come or is on a leave. I learned this activity when I was a child, growing up on the countryside. I also learned tailoring at the vocational high school that I graduated and you know girls, they are always attracted to clothes. We have collaborations with different shops in town and the products they manufacture at the centre are sold there. We are trying to produce things that the shops tell us are requested and could be sold. We serve as models for the beneficiaries; when they see what we do, and how we do it they are doing the same thing. I started with the manufacture of carpets; it used to be downstairs in group number two. Last year we participated in the volunteer week. We had an exhibition with our products in the city centre. We also have permanent exhibitions in various department stores, shops and also in schools. One of our colleagues is doing the marketing activities. Later I started to make slippers, using sewing machines. The beneficiaries are always very careful with the machines and the scissors or other dangerous tools, so we didnt have any accidents. We gave them all task according to their abilities. We also do plaster figurines, holyday cards and candles. Roxana is an economist working as PR specialist and project coordinator. She graduated not very long ago and worked for a while in a cultural centre abroad. She looked for a job in an NGO dealing with cultural or social activities and finally got this one that she likes very much. She recalls the warm welcome that she received from the people from PENTRU VOI centre (a young girl gave her a perfumed napkin for luck); all the anxieties she had because of the beneficiaries just fainted away. Didnt you have problems working with persons with intellectual disabilities? No, the only problem in the beginning was that we didnt have any special training for working with this category. Later we participated in a lot of training but at the beginning we had our fears. My friends, Roxana says, told me that 56

they couldnt work in an environment like this because of the sad feelings, but for me its all right. The work suits me fine and I can communicate well with people here. At first I had a problem with the challenging behaviour but I was quickly pleased by their warm and sensitive feelings. My parents also had a problem at the beginning because they knew that their daughter graduated in international relations and now she is working with disabled people. There was also an incident with a boy starting to shout in my office while I had my mother on the phone. She was a little afraid but eventually she understood that I was pleased with my work here. Later my parents visited the centre and were impressed. My family didnt have problems accepting my working place, Rodica says. I have three children still in school and they got used to me working with the program, sometimes even long hours. Every year we organize a summer camp and two of my boys are coming along. They know everybody here and the people always ask me about them. They also participated in the Its normal to be different program and they sang and danced with us all. We organize parties every month and many youngsters from outside the centre participates (students, neighbours, our family, friends, etc.). We also had a nice Christmas party with songs, dances and Christmas carols. All our friends and partners participated and we had a lot to prepare because they sang and played and danced in front of the others. They all have musical abilities. We also organize sport activities during the summer. I have very good relationships with Adi who is also my neighbour. When I first met him I was not employed. I saw him here and I asked him to call somebody. He said yes but he obviously forgot and I finally realized that he was different. They have problems as we also have problems so we have to understand each other. We have students during the field practice; they have their concerns when they come here for the first time. Then, when they see whats going on, they keep coming even outside the planned period. How do you call the beneficiaries? We call them by their first name because we know them all even though some are older than us (we have a man of 59 and a lady of 58). We also allow them to call us by our first name, but I heard them refer to us as Mrs. so and so during their discussions. We mainly know those who come regularly. The ones who are on the waiting list and come once a week, we dont know so well. We usually dont refer to them as a group but when we do we call them kids or beneficiaries. We learn to know them better when we go together downtown for a pizza or a cake. We try to use the public transportation and we take them to exhibitions or to church. It happens that they meet some friends on the street and then they are doing the presentations for everybody. We feel responsible for their safety when we go with them somewhere even if we take them by our minibuses.

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Staff members of PENTRU VOI also include beneficiaries in their private life events. Rodica, for instance tells that Adi was invited (he asked me) to her daughters wedding. Roxana tells that she occasionally invites some to her parties and now they ask about news from the people they have made acquaintance with; and nobody noticed that they are beneficiaries of our centre. They teach us things, says Roxana. For instance, I used to greet Vali with Hi, how are you? without actually waiting for a real answer. But Vali answered what he ate, that he will be free tomorrow and so on. So I began to respond to the same question telling about my recent activities and feelings; but in fact what I learned was that you shouldnt bother to ask how people are if you dont care. I also learned that what ever happens to me it is nothing compared to what they are striving with and that helps me not to bother so much. As a professional once told me, we are only temporary able bodied because something can always happen to our health. I also learned to be more frank and honest and to care less about all the social rules and protocols that are false and useless. For instance, if they fall in love they always make us confidences. And also the parents are communicating with us: I remember seeing a mother once looking at her son dancing in a party and she had tears in her eyes. The parents Mrs. T. is the mother of Florian who comes to PENTRU VOI since long. Florian attended a special class established within a mainstream school and succeeded to finish primary education. This was a very good opportunity for him because in a special school Florian would have been lost. When he entered secondary school it became more problematic: he was refused by mainstream school. The teachers said that Florians place was elsewhere. Then he was brought to the Neuro Psychiatric Clinic which organized a special class for secondary education. Later, with the intervention of a very influent scholar inspector, Florian even graduated high school, all though without the final baccalaureate examination; because of the inflexibility of the teachers, Mrs T added. Finally, when he turned 18 everything changed: No more school available, and no longer access to the medical services he previously was entitled to, with the consequence of physical regression (it was the adults world). The family was discouraged. Florian couldnt cope like he used to. Then a message came from PENTRU VOI, that there was a place for Florian there. At the beginning I was confused and so was Florian Mrs T. said; we would have wanted a physical rehabilitation centre and we were afraid of the possible violence from the mentally disabledBut we tried and we were very pleased and now Florian is very well. Mrs. K . is the mother of Sandu who is now 28: My situation is entirely different. Our problem started at the age of three; before nothing was observed. His diagnosis was severe autism; he was kept under treatment at the Neuro-Psychiatric Clinic because he had violent behaviour since the very beginning. Nothing seemed to work, neither the medicines nor the doctors interventions. Then I met Laila and 58

I began to observe her; she was very dynamic and I started to believe that it could be a hope even for us. We couldnt benefit from the centre from its beginning. The director told us and we understood (now we understand even better) that she wanted to start with the not so difficult cases, to gain some experience first. Then, after two years we started to come here, but it was very difficult. Sandu had been very isolated for years and he didnt want to communicate at all. At first Sandu didnt even want to enter the centre. The educators and the psychologist took him after everybody had left just to make him comfortable with the environment. It took six months before Sandu accepted to enter the centre. At that point I had lost all hope and it was only the people here who insisted and they finally succeeded. I feel very grateful to this teem because I know how difficult Sandu is; you know, people with autistic behaviour have their own world and become violent when you try to change it. Mr. C is the father of Remus, who is 26 years old: We began when he was four; with physical rehabilitation (paresis on the right side) he is also retarded even if he graduated secondary school and vocational school for shoe-making. After vocational school he remained at home because he cannot move the right side and therefore has no balance. And he is also anxious and keeps things to himself; when he feels insecure he stops whatever he is doing. After two years at home he came here. He was able to eat, go to the bathroom, and to dress and undress by himself. It is only to take a bath or to walk outside that he needs my help and he is very cooperative and obedient. He had only twice comitial crisis, in fact a tremor, and then the psychiatrist insisted to keep him under constant medical treatment. All the parents are employed in caring for their children and they are all satisfied. But they are anxious about the future when they will no longer able to care for their children. They look for a solution and they would like their sons and daughters to be economically independent (now they receive a monthly allowance of 1.4 million lei / approx. 40 euros) and able to pay for professional services. Some of them also proposed for a residential accommodation (but not state owned) for the people with intellectual disabilities without family resources. The beneficiaries The girls (some of them are coming from institutions due to parents abandonment): Ghizela (29 years) is coming from a hospital home at Gavojdia. When PENTRU VOI centre opened she was among the first. She was employed as a cooking assistant. She is now one of the residents at LAURA, an independent living facility for three young women coming from institutions. Also Gianina (28 years) is staying at LAURA and she is working as house keeper at the centre. Nicoleta (28 years) is staying in another group home, DINA, and she is also working as a house keeper.

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The boys: Catalin (23 years) used to be in another day care centre, Speranta, for children under 18 but now he has been here for more than 1 year. He is in a group working hard, he says, to fulfil the tasks. Florian (32 years) is working in the copy centre and he has been at the centre since 1997. Why do you like it here? Ghizela: The hospital home was awful - everybody was threatening, beating us or stealing from us. And not only the kids but the employees were the most abusive. The worst part was the medication; you had to take a hand full of pills and then you were all the time sleepy. You had mist in front of your eyes. The food is very nice here and I have learned to cook many dishes, especially spaghetti that I like very much. Angela is the chief cook and I help her. I am getting along very well with Angela; when we have to work we work hard, when we dont have to work than we play. Ghizela was with Laila in Denmark and France to tell about herself and enjoyed this very much. Gianina: I heard about this centre and I waited long to come here. My mother is far away and maybe I will visit her when the weather will be wormer. We eat here and in our home we have everything, we cook there and we keep everything clean. Everybody has her own room and her own things: we have a TV set and a cassette recorder for music. I work here and I try to do my job well, people are pleased with me. From time to time Laila tells me what I do wrong but she is right. We have visited other countries, I myself was to Budapest, Athens and Brussels and I spoke about myself, about my life how I grew up in institutions. I spoke in Romanian and others translated into English. Catalin: I like it here because I have good relationships with everybody; I like what I do, Im working with the printer. Florian: I like it very much here because here I practically re-entered in the society. I am getting along well with everybody, especially with the leader, she is a nice girl. We are trying to respond to her requests, depending on our possibilities. Florian was in Denmark and learned about self-advocacy. Do you have everything you need? Florian: Yes, I am getting along well with my family, I am coming to the centre, and I dont have any problem. Id like to have a place of work and more money. I am not sure if I could but Id like to work like here to answer the telephone calls, or to be a gate keeper. I am a little afraid to make mistakes, because here everybody knows me and help me when I fail. Catalin: I like the present situation even if I have some wishes, like a permanent working place and I need some books to read that I couldnt get till now. Nicoleta: Id like to work in a restaurant because I have previously worked in such a place. Id like to have more money to buy a golden chain and a golden ring. I will go with my godmother because she usually accompanies me when we visit 60

the shops in town. Actually I have only golden earrings and a silver ring that I received as a present from a girl. The most precious object that I have is a Jesus icon that Laila gave to me for my birthday. Gianina: Id like to be a hair dresser if possible. I like to cut the hair of my friends and of myself. But I like to cut the hair short so Id like to be a hairdresser for boys. I have everything, shoes and clods, jewels I dont like. Ghizela: I have everything I need; I like it very much here, all I want is to be here and to be close to Laila. Do you have friends, boyfriends, girlfriends? Ghizela: Everybody is my friend but I dont have a boyfriend. I used to but it was a mess so I dont trust boyfriends, I think it is better without them. You have only problems during the parties when you have boyfriends because other girls envy you and the boys are not stable in their relationships. Gianina and Nicoleta: We dont need boyfriends because they are all crazy and dumb. We dont want to marry because we dont trust boys. Only when you get very lucky you can find a person to merry, to have kids, to settle down. We use to go out with our group or with employees from the centre: we go to church on holydays or to eat pizza, or we walk in the park or visit the shops. Catalin: I have a lot of friends at home. Unfortunately I cannot meet them very often because I am here every day and when I get home I am usually very tired. Only in the weekends I see them, but not too much because I have to rest. I have had a girlfriend but I was unlucky, and you know how it is when parents intervene. You know parents are saying that they want all the best for their children but they are wrong sometimes (all the humans are wrong sometimes!). Florian: I have colleagues but I dont have friends. I have good relationships with the friends of my younger brother but I dont have a real friend. Girlfriend I dont have and I dont want to have one. (Bravo says Ghizela!). How do you see the future, where will you be in 5 years? The girls hope that the centre will survive, that nobody will close it and that things will remain unchanged. We shall come daily to the centre. (Ghizela says that if the centre will close she will go to Lailas place and live with her family). We like the centre because here somebody is helping and understanding us, the ordinary employers would send us quickly out. The boys: Catalin hopes to find a place to work because when you work everything settles down. Florian would like to go elsewhere to work but he knows that it isnt possible. B3. Incidents and conditions The leadership Leadership appears to be a very important factor in the success of the project. Several times the parents, employees, beneficiaries, local authorities and even the leader herself emphasized the role of the manager in the development of the project. 61

The manager of PENTRU VOI, Laila Onu, has been a leading figure in the field from the very beginning in 1990. Before entering the position at PENTRU VOI, she was an engineer working in a big electronic factory in Timisoara. In 1990 she had a 4 years daughter with intellectual disability and tried to get help from the psychiatrists of the Neuro-Psychiatric Clinic. She was elected the first president of the parents association that emerged (Speranta) and she tried to develop services without leaving her job as engineer. These were heroic times when everything was supposed to change; the direction was still unclear but everybody was very enthusiastic. The parents were not satisfied with the Romanian system, with the special schools and hospital homes. They wanted something different for their children; although it was not very clear what. As Laila Onu told us there were no community services available but only institutions and the parents from the association were those parents that refused the institution. Because of the contacts with several organizations from Holland they were offered a visit for three persons to their location and centres. Here they saw how things could be and decided to develop the same kind of services in Timisoara. Why didnt they try to change the Romanian system instead of developing alternative services? It was because there was an inside resistance to change in the Romanian system, a resistance that according to Laila Onu still exist: Even if the discourse changed the mentality and behaviours are the same even now, she says. So the parents considered that this initiative was the only option. The new association shortly became the target of the different groups of psychiatrists who tried to keep control, to patronize it from behind to fulfil their own personal objectives and interests. They didnt believe in the capabilities of parents and reserved for the association a secondary role of organizing leisure activities. But in spite of the mistrusts of the psychiatrists, the association selected as its first project a day care centre, similar to the one they saw in Holland, and decided to open it quickly. The association broke with the humble behaviour toward the doctors and psychologists and tried to find their own independent way. They decided that the majority in the board should belong to the parents and the president and vice-president should mandatory be parents. Of course there were a lot of conflicts, like it always is when traditional powers are challenged. There were changes in the board; At first, Laila Onu was the president but when the project developed she stepped down as vice-president because the activity was too time consuming to combine with her work as an engineer. In fact she used the resources of the factory (copy machine, telephone and fax) to solve the problems of the association. As Laila said, the association has an office in her factory. Then an Austrian partner offered to pay a monthly stipend for the executive director of the association. At first Laila Onu declined the offer, because it was too short time. Later the Holland partners, considering her abilities offered a permanent employment and she finally accepted. 62

But time passed by and the parents observed that no services were available for the grown up children (only those under 18 were catered for) so the association considered a new project for adults, a day care centre. The locative situation in Timisoara changed dramatically because of the withdrawal of the Romanian state from the housing policy and finding a new location became more and more difficult. A solution had to be found. This was the moment when the international friends of the association intervened and proposed to buy or to build a suitable house. But the details were important: the people from Holland didnt want to invest in a building that would be taken over by the Romanian authorities and transformed up to their wishes, and also they wanted to maintain their control on the future functioning of the new centre. Thus, in 1996 a new foundation was created, PENTRU VOI Foundation with Laila Onu as executive director and with a board where the majority was held by the Holland partners (especially because it was a very large sum of money involved). The board insisted that the Romanian state should assume the functioning expenses of the project (bills and salaries); the foreign partners should assume the building and the equipment, this appeared as a fair division of the tasks. In the meantime the legislation changed and the expenses of this kind of centres should now be supported first from the department budget and, as nowadays from the city budget. Each authority had to be approached with a lot of guaranties and reassurances. Many times the foreign partners helped Laila in the lobbying activities but the most part of the efforts and advocacy were her achievements. She had to use an iron hand in a velvet glove as she permanently remembers. She used her diplomacy and social skills to make friends and to gain a good media image, but also threats like: you have to assume the consequences of your decision on the national and international level, mainly in the European Union context! (Laila is vice president of the European Commission of Inclusion International). She has developed good relationships with public persons like the mayor of Timisoara, the Rotary Club, ministers, members of the parliament, ambassadors of Holland and Sweden, European Commission representatives from Bucharest, Baroness Emma Nicholson, the Queen of Holland who visited her organization in different occasions, and many others. What is the key for the success of PENTRU VOI? First it is our flexibility and our luck: flexibility because we didnt try to maintain with any means a certain model of services, and luck because we started late and could adapt to the newest ideas and conceptions in the field without changing any pre-existing ideas or conceptions. Then it is the foreign help, all the international relationships that we developed and knew how to keep all these years; there are personal relations and even friendships that last since 14 yearsIn fact with them the mutual trust was important. We could, like the others do, say yes to their initiatives and wait for them to leave and than do our way. But we said no, because, and we discussed everything through so now we can all rely on common agreed decisions; they know that we will not let them downIn fact the trust capital is the most important. 63

Then the local authorities, of cause, like the former chief inspector of the local Inspectorate for People with Handicap, who is a friend of us and actually is a member of the Administration Council of PENTRU VOI. He was very brave in supporting us when we challenged the legal regulations (often our initiatives announced the future developments of the laws). And the City Hall that financed with regularity our expenses even if they had their own financial problems! And, what else the staff clearly! We invested a lot in the staff training! The staff working here fluctuated a lot: many have left because they considered the salary to be too low or they found that the activity was not what they expected, but the one remaining are generally the most motivated and they represent the nucleus of the organization. Since I cannot do everything alone, I have a team around me and each of them is doing his their part of the entire building. Is the parents role important? Well, this is a peculiar issue. We started as a parent association but I think that nowadays we dont use the parents support as much as we should. Its one of my disappointments. The parent organization that I created was intended to do lobbying and support and not getting involved in delivering services. But SERANTA society is now developing some small projects (a group home, a respite care centre) and this take all their energy and they dont support the former centres any more. I am thinking about creating an own association of parents from PENTRU VOI, but it is not a very pleasant idea competing with an association that I once created

B4. Toward an archaeology of the project The communist regime in Romania went far to make those suffering from mental illness and intellectual disabilities suffer even more. As in most communist countries, the official government policy towards disabled people was to try and hide their existence. Communist governments were reluctant to admit that their countries had the same proportion of people with psychiatric conditions or intellectual disabilities as Western countries. The regime offered two "solutions. The least violent was for them to stay with their families, who would hide them away from their neighbours' eyes. Or they would be warehousedand largely abandonedin state institutions, where the quality of life could sometimes be on par with that of a prison camp. Fifteen years after communism disintegrated, these institutions are still being used as a dumping ground for people who have mental, intellectual, and physical disabilities. While conditions in some state institutions have improved somewhat, in one vital sense they remain unchanged: their primary function is still to keep their residents away from "normal" people. 64

The Timisoara Exception It may have taken about five post-revolution years to happen, but since the mid1990s, organizations have sprung up in every region, to challenge the idea that people with intellectual disabilities are damaged goods to be left on the shelf in some backroom store. Some focus on advocacy, others on reintegrating former patients and users of mental-health services. When it comes to alternative approaches to dealing with people with intellectual disabilities (such as Down syndrome and autism), the leader in the field is perhaps the PENTRU VOI Centre from Timisoara. Their success was due primarily to the new vision of organizing their services, being the first to anticipate in Romania the innovations in the field from the world wide experience. The type of services provided by a society for people with intellectual disabilities depends on the approach of the disability, on the philosophy and the vision with regard to disability. There are three phases in the development of services for people with disabilities. 1. The medical approach of handicap: this was the only approach until the end of the Second World War. The handicap was seen as a medical problem, the service offered by the society was the institution (hospital, asylum) isolated by the community. The person with a disability was considered a patient, who needs mainly medical treatment. The key word is care and the decision power belongs to the medical doctor. 2. Community based rehabilitation it starts in the fifties in Western Europe, mainly as a result of the pressure made by parents organization. Parents refused to send their children to institutions. This is the time when community based services like day centres, group homes, sheltered workshops are developed. The development of these types of services represents an important improvement of the quality of life of people with intellectual disability. The key word is rehabilitation; the multidisciplinary team, who has the decision power, does individual care plans. The priority is to develop abilities and to change the behaviour of people with disability. This is the time when different behaviourist programs are developed: the TEACH program, the Lovacs method for autistic children. The intervention is focused on the person and not on the society. 3. Inclusion period this starts at the beginning of the nineties in Western Europe and Northern America. It is built on the philosophy of inclusion, based on the belief that all people are equal and should be respected and valued, as an issue of basic human rights. It is a major shift from thinking of disability as a medical issue and recognizing that it is a human rights issue. People with disabilities are full and equal members of the society and should be fully included in the regular structures and service-systems that all citizens enjoy. These services should be accessible to people with disabilities. What inclusion means? A new way of thinking about how, where and with who people with intellectual impairments can learn, work and live. This new way 65

of thinking has resulted in a shift from concentrating on care or treatment to a focus on supporting participation, building on capabilities, adapting environments and building relationships. It is recognition that the social environment or exclusion from it, are often greater obstacles than the disability itself. The shift from taking care of in institutions to Integration of persons with a mental handicap in the society Focal Question Institutional Reform Deinstitutionalization Community Period Period Membership Period person The of Patient The Client The Citizen An Institution A group home, The a persons home, sheltered workshop,theaneighbourhood special school school A continuum of The unique array options needed by each person Developmental/ Individual support Behavioural Programs Supports

Who is the concern? What are the typical Service settings?

How are the services A facility organized? What is the model of Custodial/Medical service delivery? What are the services Care called? What is the planning Individual plan of Individualized Personal future plan model used? care habilitation plan Who controls the A professional The interdisciplinary The individual planning process? (often a MD) team What is the context Standards of Team consensus Personal circles of of decision making? Professional practice support What receives the Cleanliness, health Skill development Self determination highest priority? and safety andbehaviour and relationships management What are the major Control or cure Change behaviour Change environment focuses of intervention? and the attitudes What is the focus Professional of practice Documented and Quality of life assurance of the standards programming experienced by Quality standards? and goal attainment the person affected How do providers Community talk Community based The community about their services? outreach The New Service Paradigm, Bradley, 1994

as

PENTRU VOI project was the first one that introduced as a national premiere the services corresponding to the third period; in the meantime the 66

Romanian system of protection for vulnerable groups was dominated by the first period type of services. The objective of the national policy is nowadays deinstitutionalization and the services fulfilling these objectives are considered as very innovative. In fact, PENTRU VOI introduced the following model adapted from Inclusion International and accepted by the National Authority for Persons with Handicap as a plan of action. But what are the outstanding elements of PENTRU VOI project that makes it a good practice model of services for the quality of life for persons with intellectual disabilities in ROMANIA? These are some of the most important elements: Many types of services developed for the first time in Romania and later disseminated toward other centres: the protected housing and independent living network, the bakery (a new concept with educational, community service, and self sustaining functions), the supported employment, the respite services for adults, the social accompaniment. The public-private partnership: PENTRU VOI has a unique model of such a partnership. The centre is a public institution financed by the City Council and works in the buildings that belongs to the PENTRU VOI Foundation. It is not common for Romania that the City Hall doesnt impose their rules but accepts to finance the Foundation initiatives. Even during budget shortages the Centres expenses were a priority for the local authorities: the motivation seems to be their responsibility for the social problems taken care of by the Centre and maybe their international image and credibility. Since the very beginning of the cooperation the division of tasks was clear: the Foundation contributes with the building, the facilities, minivans, etc. while the Municipality is financing the functional expenses like electricity, water, heat, food, maintenance, salaries. All the projects were developed by the Foundation and then taken over by the centre with the functioning assured in the centre and financed by the local authorities. This agreement is stipulated in a very clear convention for partnership strictly obeyed by both partners. Another strong point is the variety of donors which increases the autonomy. Even though the Dutch donors holding the majority of the Foundation Board only represents two organizations (Friends of SPERANTA and WACR who invested an amount of about 250,000 DM in the buildings of the Centre and apartments) there are also other financers: Cooperative Dutch Foundation (with about 100,000 euros), Rotary Elst, Open Society Institute, European Commission (many PHARE programs), Ministry of External Affairs of Holland (two MATRA programs), SHIA, FUB Sweden, Romanian Ministry of Labour and Romanian Authority for Persons with Handicap. They are all financing the Foundation while the City Council is the only financer of the Centre. All these contributed to the development of a strong NGO with a property of: a big building with two floors for the day centre, 3 67

apartments for supported living, the building of the bakery, 166 square meters agricultural field, 2 minivans of 40,000 euro each and some other cars. Now the Foundation is developing a new service: a day centre for persons with severe disabilities and persons with multi-handicap in a new building of about 200,000 euros. All these properties make the Foundation a very important and strong partner in negotiations with the State representatives. The local campaigns for increasing the community acceptance for the persons with disabilities: It has until now been three annual campaigns Learn to listen, Its normal to be different, and Put yourself in my place. The campaigns were supported by local personalities and media and had a big impact on the citizens from Timisoara. PENTRU VOI is the first Romanian organization that implemented and used an ethical code for their services and published it on their internet site. This is one of the key elements in observing the human rights for their serviceusers. The legislative initiatives: most of the laws in the field were adopted after PENTRU VOI developed the services, thus serving as national role models. Even the Board model was evaluated by The Supreme Court of Justice (the case was presented in the Law Revue and was used as a precedent for other Romanian NGOs). The Board is one of the strong points of PENTRU VOI having people with connections and influence in the political and business world. National lobbying: the first national strategy for disabled people was initiated by PENTRU VOI who created a coalition of NGOs and a partnership with State Institutions (Ministry of Health, Ministry of Education, Ministry of Labour, and National Authority of Persons with Handicap). To make it adopted they organized a conference with Bengt Lindquist, while he was a special rapporteur for the UN and then a follow up workshop with Baroness Emma Nicholson. All the international connections were used to lobby at the national level. Self advocacy for persons with intellectual disabilities: the self advocates from PENTRU VOI were invited and talked in front of the European Parliament and European Commission. Gianina told her story in Athens, on the scene of the Concert Hall in front of 2000 guests (president of Greece, members of European Parliament and European Commission) on the opening of the European Year for persons with disabilities. Also five other young people with disabilities were presenting their personal testimony but she was the only one from Eastern Europe representing the intellectual disability. PENTRU VOI has an international recognition as a model of excellence: Open Society Institute conferred a diploma in this respect; they are requested to present their model to numerous conferences organized by the 68

International Labour Organization (ILO), Handicap International, Social Ministry from Sweden and others. PENTRU VOI is one of the first and few organizations that lobbied at the European level (Parliament and Commission). They did this together with Inclusion Romania, being supported by Inclusion Europe. Thats why PENTRU VOI is one of the most well known NGOs at the European Parliament level.

E. CONCLUSION PENTRU VOI has obtained a leading position in the national association of parents (Inclusion Romania) where LAILA ONU is the vicepresident, doing and supporting specific lobbying and advocacy in favour of intellectually disabled (employment facilities, financing solutions, staff norms for the day care centres, legislative initiatives, etc.). PENTRU VOI is characterized by a strong belief in its own ideas and possibilities (sometime based on foreign models) in spite of local experts with authority positions or even academic positions. In fact PENTRU VOI has demonstrated that experience, high motivation and good will are far more important for good services and service organization than theories and politics. PENTRU VOI succeeded to become a nationally recognized model of public private partnership that is strongly recommended everywhere but in fact is very rare in Romania. It is based on mutual trust by the partners who worked long time together, knowing and accepting their mutual concerns and priorities; it is based in fact on the consistence of long term and well tested activities, on the trust established by keeping promises and the stability of well clarified roles. PENTRU VOI has demonstrated the power of flexible change. As a response to the concern expressed by parents and beneficiaries about the future independence (especially after parents disappearing), PENTRU VOI does the job seeking and job coaching. Its a multi-purpose activity, seeking also community integration and it is regarded as a solution for individual life support scheme for the intellectually disabled. In fact the beneficiaries, in spite of their disabilities they are regarded not only as human beings but as valuable persons with lessons to share, even to professionals as we remember Roxana described. The beneficiaries, on their side, seem to have developed a sense of self in which they see themselves as companions to staff, and are able to see themselves having new roles in the future. It is reasonable to see this as a benefit of the way in which they are perceived and met at the centre. It seems that it is this, quite fundamental and stable shift of orientation that represents the power so striking throughout the whole activity at PENTRU VOI. 69

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Differences and commonalities

The Romanian projects chosen for this study represent three different types of service facilities. Centrul de Recuperare ARNSBERG, in Alba-Iulia, is a centre providing rehabilitation services for children and adults living within its region, including people living in isolated communities in the mountains. LACRIMA project in Bistrita is a special school originally founded by parents but operated and run within the ordinary educational structure. Finally, PENTRU VOI centre in Timisoara, is a multipurpose centre providing training, work opportunities and support to independent living. While representing a wide spectrum of services and supports, such as therapeutic, educational, vocational and independent living supports, all the projects represent resources for persons with intellectual disabilities, of whom a large number of the persons served have severe difficulties. Since it is not the professional services as such that are at core of our orientation, but rather what makes them stand out in comparison to other projects targeting the same group of beneficiaries, we believe that it is both useful and sensible to try to look for commonalities and differences across the three projects. What we have done is basically to thoroughly examine all the material obtained about each of the projects for possible themes to compare. Not all themes are comparable even though they might appear in two or all of the projects. It doesnt give much meaning to compare pedagogical or educational stiles between LACRIMA and PENTRU VOI just because they both provide training. The purpose and the context of the training taking place in the two projects are too different to be able to compare. Neither would it contribute to the general understanding of the successful elements to compare the degree to which the quality of life for people served is improved. Here both the character of improvement and the measures applied will make the efforts incomparable. Thus, we will only focus on such commonalities and differences that we believe to be comparable, keeping in mind the differences in contexts, scope and operation of the projects. The most important themes emerging through a comparative analysis of the three projects are; parental involvement; management; networks ; the relation between staff and the persons served especially the sympathy and identification with the persons shown by staff; and inclusive practices. We will comment on each of the themes separately, and at the same time try to show how they are related. Management In all projects a strong emphasis has been put on the importance of management for the success of the projects. On the one hand, this could be regarded a rather trivial point to make, since management will always tend to come up as important, be it for successes as well as for failures. A leader or a manager will always have a central role to play in a project, simply because that is what leadership and 71

management to a large extent is about. On the other hand, since we are now dealing with three projects which have been nominated and, on the basis of assessments, finally have been chosen to be among the best of their kind in the country, it is all reasons to believe that the leadership and management in these projects contain some important qualities. So what characterizes the management of these three projects? One thing that strikes us is that two of the directors (for LACRIMA School and PENTRU VOI) are both parents of disabled children. It is probably not customary for projects of this size, even though targeting disabled people, to have parents as directors. In the case of LACRIMA School the director even had high formal qualifications, in fact far higher than would be expected for such a position. Even in the case of PENTRU VOI, the director had high qualifications, and obtained even the qualifications normally required for that kind of work. So they were not only parents, but people with high qualifications, who, according to testimonies had the ability to utilize these qualifications to the benefit of the projects. On the other hand, the director of ARNSBERG centre was not a parent, although still regarded as being of vital importance to the success of the project. The question then being whether or not there exist any commonalities concerning management which applies to all three projects. Now, it might be that management was not emphasized to the same extent in the description of ARNSBERG, as it was in relation to LACRIMA School and PENTRU VOI. It is also true that the manager was replaced during the time of the study. Still, it is established that the first manager was decisive in the establishment and development of the centre and in forming the centre into what it was at the point of our first visit. And his contribution in this respect very much resembles that of the two other directors. In short, it had to do with visions and an ability to communicate these visions to others. It had to do with courage to pursue the visions, to convince donors, to elucidate the visions for staff and to motivate them to work in the same direction. They were all what we would call charismatic leaders with the gift of the spirit to make people follow them. However, being an important quality of a leader, the embodiment of this property should probably not be overemphasised. Even though some people have far greater abilities than others to incite and to motivate other people, it is in most cases equally important what they try to motivate them for, and how that would be perceived within the given context. As has been pointed out earlier in the report, Romania was in the beginning of the 1990s in a state of upheaval where everything was open to questioning and change. The existing services for persons with disabilities were already by parents regarded as undesirable, any many were already forming associations in order to fight for better alternatives. So it was not the managers alone that made the difference. It is hard to imagine that any leader in the beginning of the 1990s, regardless of spiritual gifts, would have made able to make Romanian parents of disabled children enthusiastic about the idea of building traditional institutions. What made the difference was rather a combination of a 72

strong desire for change, a favourable historical condition and the availability of good management. An important component in good management, and a decisive one in order to make change sustainable, is the ability to delegate and to transfer the properties of good leadership to others. It is not enough to enthuse and to motivate if the enthusiasm and motivation remain dependent on one person, who will eventually resign. This is a problem often referred to in relation to strong and ambitious leaders, simply because strong and ambitious leaders are often difficult to replace. It could be because the leaders themselves dont leave enough space for others to develop, but it can equally well be because all potential successors have too much respect for the leader even to try, or that the rest of the organization will not accept anybody that show such abilities because they are constantly compared in relation to the leader. Nevertheless, the survival of any innovative movement beyond the leading figures depends on a successful succession of the roles filled by these leaders. Even though the primary interest of this study is the present quality of the project, and the historical factors contributing to this quality, it is still both intriguing and valuable to reflect upon the further prospects of the projects, especially since the three projects reflects certain differences in this respect. The most striking difference is that while PENTRU VOI has a fair amount of control, not only over the recruitment of staff but also the allocation of internal positions, in ARNSBERG centre and in LACRIMA project in Bistrita these decisions are mainly made outside the control of managers. In ARNSBERG, the manager himself was replaced. To what extent this will contribute to a succession of the qualities that qualified the project for participation in this study is a question that we will not be able to answer. Still, it points at a dilemma. The more innovative a project is, the more likely it is to conflict with existing and dominating values and ideas, and the more important it will be to be in control of means and resources. Also in LACRIMA special school recruitment and reposition of staff is controlled by the school authority, which of course limits the space for management in this respect. In the long run it will always be difficult for an institution to maintain qualities beyond the ordinary when it is the ordinary that controls the recruitment. For PENTRU VOI, being the project that most decisively has challenged the existing structures and authorities, the degree of independence and control over means and resources has probably been a precondition for its present position. No institution is completely independent, and even for PENTRU VOI the basic financial security is provided by the local government. Still, PENTRU VOI has managed to position itself, institutionally as well as symbolically in such a way that they entail a certain degree of autonomy, which means that they to a large extent can control their own destiny. To what extent they will be able to utilize that autonomous position is something for the future to tell.

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Parents The importance of parents is evident both for LACRIMA Special School and PENTRU VOI. In both cases the projects were a product of parents initiatives, although in PENTRU VOI the parents movement was more involved in the preceding projects (The LONG BRIDGE and SPERANTA) that PENTRU VOI was a prolongation of. But the continuity was maintained by the director. For ARNSBERG, however, parents did not play any particular role, as far as we know, for the establishment and development of the centre. To what extent this has played any significant role is difficult to say, but it is reflected in other studies (Fylling and Sandvin, 19939 ) that parents typically have a far more holistic perspective on their children than professionals, indicating that a stronger parental involvement in the formation of ARNSBERG centre could have contributed to a broader scope of orientation than is evident to day. The close contact they have with parents in their line of operation could probably have been utilized for more mutual inputs. Another feature worth denoting is the fact that both at LACRIMA School and at PENTRU VOI, except from the director being a parent, the participation of parents has decreased substantially since the establishment of the projects. From both directors this is admitted with a certain disappointment. From being an effort of solidarity, driven by a common vision of creating together a better life for their children, the projects has gradually institutionalized into becoming an independent service facility, with a clear organization and its own monitoring structure. LACRIMA Special School is even a part of the formal public educational structure, making it even more difficult for parents to find their place. What this partly reflects is probably a more general tension between voluntarism and organization. The more organized the less space it gives for voluntarism that, as per definition, is not a formal part of the organization. This probably also has a psychological aspect. Voluntarism is not only about contributing on voluntary bases. It also involves a certain degree of fellowship, a gemeinshaft (Tnnies, 1912), in which a group of people are interdependently responsible. Within an organization these relations are formalized, giving people different obligations and responsibilities, and making those without a formal role of an outsider. Even with strong sympathy for the organization, the natural sense of belonging, of being a part, is reduced, which risks, eventually, a draining out of peoples motivation for active participation. This formalization should not be understood as a gradual destruction of the projects. On the contrary, a gradual formalization is most often a necessary process, especially as projects grow larger, in order to secure a stable quality and sustainability, but it does also involve a degree of routinization of the enthusiasm, flexibility and fellowship characterising early stages of social movements. In a way
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it is a price to pay for stability and predictability. It does not mean that enthusiasm, flexibility and fellowship are given away entirely, something which these three projects clearly demonstrate. It is more a question of finding a balance. However, the decrease in the participation of parents is a disturbing feature. Understanding the importance of parental involvement, not only in the establishment of the projects per se, but also as the prime source of what is regarded the most important element in these projects; the image of and identification with the other, it is in a way alarming that their active involvement is fading. The question is whether it has to be that way. We have showed that the institutionalization and the formalization of the projects tend to make parents with no defined role outsiders in relation to the project. Some of these consequences could probably have been combated, for instance by creating more defined roles for parents, be it through employment, in governing bodies, strategic planning groups, think thanks, development projects etc. The relation between Staff and the persons served Another striking and, we believe, related commonality across all projects is the values, enthusiasm and dedication observed among staff, something which is beyond the ordinary and expected. A characteristic feature is the sympathetic and friendly way in which staff meets and relate to the disabled children and adults that benefits from the services. This must be observed and understood on the backdrop of the traditional situation of disabled people in Romania, described earlier in the report. The relations between providers and users of services in these projects are characterized by mutual respect, personal identification and friendship, substantially reducing the traditional gap between us and them (Bauman). As pointed out by Bogdan and Tailor (19XX), it is important to describe as well as to analyze incidents of acceptance and of true mutuality between people with and without intellectual disabilities. Here we have a degree of mutual sympathy and acceptance that stands out in relation to the hierarchal, indifferent and sometimes even hostile environments that intellectually disabled people in Romania inhibit. What was it that provided the difference? One answer is good management, but is that a sufficient answer? It is not very likely that any good manager would be able to provide its staff with sympathy towards people with severe intellectual impairments, who are excluded and abandoned in the majority of the country. What the directors of LACRIMA School and of Pentru Voi were able to pass on was an image and representation of the persons served that was based on their experiences as parents. They loved their children equally, and because they knew that a disabled child was equally precious to parents as any other child, and that they needed that love even more than others, they were also able to generalize that parental love towards all disabled children under their protection. Both directors referred explicitly, several times, to parenthood and to the love of their own children when principles and values were justified. Because this love and acceptance is so natural to them, it is probably also 75

far easier for them to commute it to others, making it possible for other staff to identify themselves, not only with parents natural love for their children, but also with the children themselves. The director of ARNSBERG did not, as far as we know, have the same personal or familiar experiences with disabled people, but the curiosity that he earlier had felt about what was behind the walls, and his later dedication to dismantle this walls, suggest that he had a natural ability to relate with those people, an ability that he seemed to have been able to commute to his staff. All the efforts that the staff at ARNSBERG centre has put into making the place as friendly and pleasant as possible witness about this ability to relate and to identify. So, perhaps it is not the parenthood itself, but the ability to identify with the disabled person as a subject equal to you, that is of prime importance. This identification comes naturally to most parents but is also possible to develop for others. This conclusion, being far more promising than the alternative, does not lessen the importance of parents in such projects, as shall be further revealed below. There is also another important commonality, across all three projects that are related to staff. All three projects reported on a certain turnover among staff. Both in PENTRU VOI and in LACRIMA Special school in Bistrita this was reported with certain ambivalence. On the one hand, it is consuming to spend time and energy to train people just to see them leave. On the other hand, it is also suggested that those who stay are the ones who have the dedication and capacity necessary to do a good job. Many of the staff told us about the fear they felt before entering the job about working in such an environment, a fear that soon vanished as they were socialized into the friendly atmosphere that existed. Perhaps for some this fear never disappeared. This indicates that turnover also works productively towards that succession discussed above, even in LACRIMA School where the manager has no control over the recruitment process. At ARNSBERG centre the turnover was perceived more as a problem, first and foremost because they where more dependent on staff with specific education and training. Even here people were provided on the job training making turnover even more costly. Still, even though it was probably easier for those with the highest skills to find better work elsewhere, it is also likely that those with the strongest dedication would hesitate more to leave the premises. Inclusive practices One thing is the sympathy and identification with the other characterizing the atmosphere in this projects created by staff and management, which in itself contributes to the enhancement of the quality of life for the disabled people benefiting from their services. Another question is what they actually do, how this sympathy and identification materializes into practices that makes a real difference in the lives of the people, beyond the friendly atmosphere. The good relations developed is an important part of, and probably also a precondition to the success 76

of these projects, but it is not sufficient enough for them being selected in this study. They were all selected because of practices that were regarded as innovative and progressive, contributing substantially to the improvement of quality of life for persons with intellectual disabilities. These practices, which vary between projects according to the different scope of services offered, have been described in the case studies. The question here is to what extent these practices also contain elements of commonalities that point at common factors significant for such success. Before going further into this it is necessary to notify a striking feature reflected in interviews both with staff, parents and beneficiaries of the projects. That is the amount of Stigma, in various forms that is reported connected with all three projects. Not only do disabled children and adults reflect experiences of hostility, exclusion and other forms of misbehaviour because of their disability, so do also parents for not complying with traditional customs of keeping their disabled children away from the public room. Much of these unfriendliness and misbehaviour is probably due to the same anxiety and fear that were reflected by staff. Even staff themselves and the projects as such often experience inhospitable behaviour because of the nature of their work be it from public officials, neighbours, teachers in schools they cooperate with or people in the streets, the most serious being LACRIMA project in Bistrita which was set on fire. Another feature across projects, which is probably both a cause of and a strategy to combat such fear and hostility described above, is exposure . One of the first things that the manager of ARNSBERG centre did was to dismantle the walls surrounding the centre. They also invited the public in on open days etc. and exposed their activities as well as the people to the open, also through public media. Staff at ARNSBERG also tells about social activities which includes going to the city for a pizza or going to the cinema. At PENTRU VOI, neighbours, friends of staff and the general public take part in activities, parties, exhibitions etc. PENTRU VOI has a high profile in the public room, often portrayed through media and referred to as a national model. Even Bistrita has been successful in mediation through media, especially through the weekly TV-show dedicated to the association. This exposure is an important part of an inclusive strategy, insisting that people who have been hidden away, be it in their homes or in public institutions have the same right as anybody else to access and to be part of the public room as anybody else. It is interesting to see the way in which this disclosure and the regaining of the common room becomes a kind of modus operandi for this projects, taking a variety of different forms. PENTRU VOI has a wider span of inclusive practices than do the other two projects, for various reasons. For LACRIMA, the scope is to some extent limited by the character of the project, being a public special school. The aim of a school is to provide education and development, first and foremost within the limits set by the school time. In LACRIMA, also providing respite care the hours are longer, but 77

they are mainly spent on the premises of the school. The number of inclusive activities is limited, but the school has a strong emphasis on social skills and life skills in order to enhance the pupils abilities to cope in an inclusive environment. Even at ARNSBERG the extent of inclusive practices is limited by the projects scope of operation. Having defined itself as a rehabilitation centre, the main focus is on the individual child and its functioning. That does not prevent them from enjoying the public facilities in the area and the city of Alba Iulia to make the temporary stay as pleasant as possible. This comes as a natural consequence of how the children are perceived, but it is not a part of a deliberate strategy of inclusion. With a more holistic conception of rehabilitation the centre would probably have paid greater attention even to the environment in which the children live, which would have created a space for a wider set of inclusive strategies. At PENTRU VOI, working more deliberately towards independent living inclusive practices are both vital and extensive. The activities most directly related to inclusion are of course the supported employment and the independent living facilities offered, and the innovative semi-independent initiative; the network of social houses. Equally important is probably the self-advocacy work and the advocacy work and counselling offered to other projects and parts of the country and abroad. Networks So far we have mainly been looking at internal factors. It is, however, imperative to acknowledge that none of these projects are isolated islands, generated through mutation and nurtured by its own internal processes. On the contrary, all three projects have a preceding history that was decisive for their establishment and orientation, and all three projects have extensive contacts with external networks from which they tap all from economic resources to energy and ideas. For PENTRU VOI and LACRIMA project in BISTRITA, parents and parental organizations played a vital and vibrant role in the early stages of establishment. Both projects were initiated by parents who found the existing services inadequate and poor and wanted to develop something better for their children. Parents and their organizations have also represented important networks in the development of the projects, although less so today than in the early stage as revealed above. For these two projects, specifically, they have also represented important networks for each other, and they have had an important common alliance with Inclusion Romania. All three projects have had international donors that not only provided money but who also showed an interest in their specific area of operation. PENTRU VOIs Dutch donors did not only provide economic support, but also professional and moral support, especially in relation to the tensions between PENTRU VOI and local authorities. They also became active contributors through representation in 78

boards and by organizing excursions for manager and staff members in Holland. The same is through for the Belgian donors of LACRIMA who not only did fundraising but who came and worked at the centre every year. A feature revealed in the interviews with the managers both at PENTRU VOI and ARNSBERG centre, which might be of vital importance is the personal relations and friendship established between the managers and donor representatives. Such friendships not only count for good and mutual relations but also for the trust necessary for long term investment, as pointed out by the manager of PENTRU VOI. And such relationships probably require a common understanding and a set of shared visions concerning the area of operation which might be difficult to establish in relation to general donor or charity organizations. Equally important, however, is probably the fact that the local initiators retain full control over the project and that the projects do not become totally dependent on external donors. All three projects are well integrated into the generic structures of public services, although with different degrees of boundaries. As revealed earlier, both LACRIMA project in Bistrita and ARNSBERG centre in Alba Julia face strong regulations from public authorities, while PENTRU VOI has a stronger degree of independence. Still, for all three projects even public authorities and officials represent an important part of their networks, which not only impact on the direction of the projects but also represent channels of input from the project to the general systems of services. Conclusion Tying up the comparative discussion, as illustrated in the diagram below, it seems evident that the essence of success reflected in these three projects, that makes them all stand out in relation to most other projects is the sympathy and identification with the persons served as shown among managers and staff. Sympathy, we believe is something more than empathy, involving an emotional bond to and a personal identification with the other as a subject, reducing the traditional gap between us and them. This is also what beneficiaries themselves, in various ways point out as the most significant qualities of these projects, and which we therefore believe contribute the most to the enhancement of their quality of life. A pertinent question then is where this sympathy and identification comes from, in a country where the gap in relation to persons with intellectual disabilities seems to have been more substantial than in most other European countries. We have argued that one important source for this sympathy and identification is parents, who in the advent of a new political era saw the possibilities of making a better future for their children. For parents, this sympathy and identification come natural. It may be mixed with a lot of other feelings, but shared with other parents through networking this natural sympathy and identification with their own children are verbalized and transferred into shared visions and values for action. With parents 79

strongly involved not only in the initiation or establishment but also in the management of the projects this sympathy and identification with the other are commuted also to staff. The analysis even suggests that there is a kind of natural selection of staff going on in this projects in that staff members who find it difficult to sympathize and to integrate this perception of the other also find it difficult to work in this projects and ultimately resign. ARNSBERG centre differs from the two other projects in the sense that it was not initiated by parents. Still, we have argued that some of the same qualities are evident even in this centre, which to some extent jeopardizes the argument that parents are vital in this respect. It indicates that some of the qualities can evolve without parents involvement. We believe, however, that instead of looking for alternative explanations to parents, we should look for additional explanations. We do believe that ARNSBERG centre is exceptional, in the sense that it has been able to establish a way of perceiving the other that in many respect is similar to the one provided by parents. Without too many clues to derive from, one explanation suggested is that the former manager brought in to the project an ability to identify with the persons served, which sat a standard for the project as a whole. What this ability to identify is derived from is difficult to say since we dont know much about him, but the curiosity he described about what was behind the wall, and his later dedication to dismantle this wall and to bring people into the open indicate a certain devotion. It should also be added that ARNSBERG centre is a more limited project compared to the two others, dedicated more or less solely to the enhancement of physical and mental functioning. Being an important aim in itself, we believe that a stronger involvement of parents would have contributed to a more holistic perspective on rehabilitation than what is evident in ARNSBERG today. It should be mentioned, though, that ARNSBERG centre in fact has a quite extensive contact with parents through the counselling that they provide, perhaps even more extensive than is the case in the two other projects if we discount for the managers. This is probably important to the centre, but could have been utterly utilized by giving parents a stronger role even in the development and running of the centre. We further believe that the inclusive practices evident in all three projects are strongly linked to the sympathy and identification described above. Inclusive practices take their energy, so to speak, from sympathy and identification, especially the informal ways in which persons with intellectual disabilities are naturally included into staff members own social networks and private life, as described for PENTRU VOI. To sympathize and identify with the other as a person with more or less the same desires and dreams, disappointments and grief as oneself, also means wanting the other to be happy, and feeling pain when the other is hurt. Management is important, not only in commuting this sympathy and identification to staff, but also in putting it into practise. It has to do with developing, together with staff, models, activities and ways of being together which reflect this sympathy and identification. Because this practise spring out of 80

and are energized by such sympathy and identification with the other, it will also tend to be rather inclusive. The degrees to which these practices become inclusive will probably also depend on the imaginations and models available. The will and the natural inclination to think in inclusive terms is probably an indispensable, but not necessarily a sufficient condition to succeed in creating an inclusive practice. Here, we believe that networks play an important role in providing examples, images and experiences of inclusion. Parental networks are important in that they provide a generalized notion of whats best for our children . International contacts and organizations represent links to bodies of experience, knowledge and ideas, accessible through conferences, literature and site visits that help shape the dedication in the constructive and inclusive way revealed in these projects.
NETWORKS MANAGEMENT

PARENTS

STAFF MEMBERS

SYMPATHY & IDENTIFICATION

INCLUSIVE PRACTICES

ENHANCEMENT OF THE QUALITY OF LIFE

Annexes to follow on next page 81

Interpersonal Relationships Affiliations:

Affection: Intimacy: Sex: Friendship:

Interactions:

Being socially active, involved in relationships (friends, colleagues, neighbors, relatives), group member, Trusting, liking, loving relationships, environment, people he/she care for, Privacy, own secrets, confidentiality, control of own life, Sexual involvement, own sex life, protection, knowledge, Friendly environment, best friends outside family members, reliable friends, friends you care for, Extrovert behavior, open to relationships, trusting others, not being afraid of people, going to new environments Buying things that he/she likes, needs, enough room, enough pocket money, important possessions (home, car, the key of the apartment), food security, accommodation security, working in a community setting. Having a profession, being productive, work satisfaction, good salary, feeling of being useful. Learning performances, diplomas, sense of utility, learning preferences, needs, objectives, Goal setting, life plan, wishes, desires, Use of technology (PC, TV remote, Internet, interphone, elevator, airconditioning, electronic devices)

We are looking for projects that: Develop for beneficiaries with ID an attitude/behavior of implication in social relationships with friends, colleagues, neighbors, relatives, etc. Promote affectionate relationships with people in the environment. Promote confidentiality and control of its own life. Promote a policy of dissemination of knowledge about sex life and sex protection. Develop an attitude of friendly and caring behavior toward peers.

Develop an attitude/behavior of trusting and open relationship with other people.

Material Well-being Ownership, possession:

Projects that empower persons with ID to have and to administrate possessions, projects that advocate for independent behaviour of these persons and obtain from proxy a trusting and confident behaviour toward these persons. Projects that accomplish an independent (or supervised) satisfactory employment of persons with ID. We are looking for projects that: Promote learning experiences and habilitation results for persons with ID Promote a meaningful life for their beneficiaries. Habilitate the persons with ID to get used and utilize modern technologies.

Employment:

Personal Development Education and habilitation: Purposive activities: Assistive technology:

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Physical Well-being Health care: Satisfactory health support, self care, well being sensation. Support for motion, catch the ball, climb or descend the stairs, trips and excursions. Morning feelings, frequency of drug taking, fear of sickness, confidence in life. Food preferences, being satisfied, enough food, support for eating. Physical external development, mobility, eating, dressing, bathing, toileting, medications, hygiene? Alternative possibilities, selection possibilities, making own choices, choosing partners, outfits, etc. Being consulted, being asked, being permitted to have options, Taking own decisions, having pocket money, having the key of the apartment, Personal wishes, dreams, objective for this week and next year or entire life, Advocate free medication for persons with ID to health care staff and promote understanding of medication effects. Promote development of independent motion and habilitation for physical exercise for persons with ID. Obtain a better health estate for their beneficiaries.

Mobility:

Wellness:

Nutrition: General support for:

Offer the possibility for food satisfaction for their clients. Offer and promote general support for the beneficiaries.

Self Determination Choices:

Offer the possibility of independent choices for their beneficiaries.

Personal control: Decisions:

Promote and advocate for their clients to be considered responsible persons. Obtain the proxys acceptance for these requirements.

Personal goals:

Habilitate their beneficiaries for these goals.

Independence :

Liking and disliking, being let alone if desires, being let to be wrong (to learn from mistakes)

Promote and advocate for this kind of behavior/attitude for the proxy of persons with ID. Made them reject institutionalization.

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Social Inclusion Welcoming social networks/ support systems: Integrated environments, participation:

Trusting/helping environment, member of groups, community integrated (using public utilities), being known, respected, Accepted member of the community, accepting this membership,

Make from their beneficiaries integrated members of the community.

Promote and advocate for the acceptance of their beneficiaries as non-institutionalized members of the community.

Rights Absence of unfair discrimination:

Barrier free environments:

Calling names, being left to wait without explanations, being considered abnormal, not having confidence in his/her abilities, Absence of fear for new environments (new places, new towns, new countries), traveling alone,

Obtained from the community, through advocacy campaign of a fair treatment for their beneficiaries. Obtain from the beneficiaries an open and fearless attitude/behavior for new places, towns and countries.

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INCLUSION INTERNATIONAL STUDY ROMANIA

INVITATION FOR NOMINATIONS OF SUCCESSFUL AND INTERESTING PROJECTS AND PROGRAMS FOR PARTICIPATION IN OUR STUDY __________________________________________________________________ To Mr/Ms x Dear Sir or Madam: We wish to invite you to participate in a study of the processes and methods used to achieve improved life conditions for persons with disabilities in Romania, with specific focus on persons with intellectual disabilities. The details are as below: 1. Background and aim Inclusion International, in collaboration with its national member organizations in Kenya (KAIH), India (PARIVAAR), Romania (Inclusion from Romania) and South Africa (DICAG and DSSA), are jointly undertaking a study of different processes and methods used to achieve social change and improved life conditions of adults and children with intellectual disabilities. We want to explore, understand and describe successful change processes and learn from them. We will address the following questions: Which projects resulting in sustainable improvements of life conditions for adults and children with intellectual disabilities can be found in the four countries? Which are the most strategic change agents, internationally, nationally and locally? Which methods are most effective in order to initiate and maintain processes of change? What other factors, deliberate project interventions as well as contextual factors, are important to achieve a positive change?
The study is financed by Sida (Swedish International Development Agency) and is coordinated by two Swedish consultants, contracted by Inclusion International. Stockholm University is providing scientific back stopping. In Romania the Study is coordinated by a team consisting of:

of y organization/agency/department

Conf. Dr. Teodor Mircea ALEXIU, West University, Timisoara, team leader, Laila ONU , director PENTRU VOI, Timisoara, parent of a mentally disabled child, Sergiu Radu RUBA , president of the Romanian Association for the Blind Persons, himself a blind person and Aurora TOEA the director of the Center of Resources and Information for Social Professions. 85

2. Identification of projects for participation This invitation is extended to all initiatives and projects that exist within the following various categories and which have made a deliberate effort to change the situation of persons with intellectual disabilities: National non governmental and governmental projects Provincial/regional non governmental and governmental projects Local non governmental and governmental projects. Inclusion International national member organizations (parent associations) The Romanian team is soliciting nominations that will amount to 20 projects of which three will be selected by the national research team, for participation within the study. The selection criteria will be as follows: a) The project must have impacted positively on the quality of life of persons with intellectual disabilities in order to be selected. A short list of examples of what we mean by quality of life is attached. At least four of the listed eight Quality of Life domains must show improvements (or one domain must show exceptional improvement). b) The project must have been in operation for more than 2 years and have less than 50% of its operations financed by foreign resources/funding or have a trend of phasing out foreign funding/resources without affecting the quality of the project and/or the continued efforts to achieve change. c) The project must have a significant impact in the community (nationally or locally) not only be limited to service provision for a small group. d) The projects must be interesting to study. This means that - the projects selected should be different (national as well as local initiatives, government as well as NGO initiatives should be considered) - the projects should be innovative - the projects should provide many useful lessons that others can learn from 3. Benefits of participation By participating, your project/program will stand the chance of being published as one of the examples of good practice that others can learn from. 20 projects will be selected for publication in a small booklet format (appended to the national report) for distribution both nationally and internationally. All twenty projects selected within the nomination process will also be invited to participate in a national seminar to disseminate the results of the national study. In addition to this, it is hoped that your participation within the study will lead to an empowering process for further development of your project and its recipients within the project. If your project is selected among the three to be further explored you will benefit from working together with our researchers and to learn more about explorative 86

and qualitative methods to investigate change processes and to undertake impact assessment. Your project will be presented as an example of good practice in the main report of the Romania study. 4. What do you need to do to be considered? To participate, you need to make a self assessment and to motivate why your project fulfils our selection criteria. To assist you we have prepared a questionnaire, which is attached. 5. How do I make my submission?

Please send your completed questionnaire to the following address / e-mail:

Center PENTRU VOI , Slavici 47, 300523 Timisoara laila@pentruvoi.ro; tmalexiu@socio.uvt.ro

6.

When is the deadline for submission? 31ST OCTOBER 2004

7. For any questions/clarifications, please call - 256 228062 - 0722 781726

Please turn over the page now to complete the questionnaire

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QUESTIONNAIRE 1. Details of Institution/Project -----------------------------------------------------------------------------------------------------------------------------------------------------------------

Name: Location:

Project Postal Address: --------------------------------------------------------------------Contact Person: -----------------------------------------------------------------------

Telephone Number: ----------------------------------------------------------------------Email: ------------------------------------------------------------------------------------------Type of implementing agency/organization: ---------------------------------------------Date of Registration: (attach copy of registration) ---------------------------------------Name of person in charge of the project: ------------------------------------------------Sponsors Names and Addresses: 1. -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------2. -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------3. -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------4. --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------88

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

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2.

General information about the project

1. What is the objective of your project? ----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------2. Describe the major activities/interventions you carry out (e.g. training, advocacy, awareness raising, legal work, financial grants, job placements, education, vocational, rehabilitation, self help groups, support groups, counselling, income generating activities, any others) Use as much space as you need, but make it short! Activity (describe) What did you aim at achieving? To what extent was it achieved?

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3.

Describe the changes observed in the QoL of persons with intellectual disabilities? (Refer to the list of criteria attached.) Use as much space as you want to explain this is a key issue!

Quality of life domain Emotional well being

Improvements noted

Interpersonal relations

Material well being

Personal development

Physical well being

Self-determination

Social inclusion

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Rights

4.

How substantial is the impact? 1. How many are reached by the project/program? Target groups How many persons has your initiative reached so far? %-age of total number expected in your area of operation?

Males over 18 Females over 18 Boys under 18 Girls under 18 2. Indicate the types of disabilities included in your project/program and the approximate number of people reached. Type of Disability
Number of adults with Mild Number of children with Mild M F Number of adults with Moderate Number of children with Moderate M F Number of adults with Severe Number of children with Severe M F

Male/Female

3. What other signs are there to show that the impact of the project is significant? ________________________________________________________________ ________________________________________________________________ 92

________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ __________________________________________________ 5. How sustainable is the project? 1. How many years has the project been on-going? ____________________

2. State the approximate amount of funds you use every year. About: __________________________________________________ a. The community contributes (a) Nothing (b) b. The government contributes (a) Nothing (b) c. Sponsors contributes (a) Nothing d. Donors (a)

Half (c)

Everything

Half (c)

Everything

(b)

Half (c)

Everything

Nothing

(b)

Less than half

(c)

Everything

3. State whether the contributions have increased/decreased/stopped over the last two years Contribution Community Government Sponsors Donors Increased Decreased Stopped

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4. What other signs are there to show that the project is sustainable? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________ 6. Why is your project interesting to study?

1. Which were the 5 (5) most important factors that contributed to your success? a.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________________ b.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________________ c.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________________ d.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________________ e.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________________

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2. Which difficulties (max 3) have you experienced and how did you overcome them? a.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _________________________ b.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _________________________ c.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _________________________ 3. In about 20 words, state/describe your vision for the project for the next 2 years _______________________________________________________________ _______________________________________________________________ _______________________________________________________________ _______________________________________________________________ _______________________________________________________________ _______________________________________________________________ _______________________________________________________________ __________________________________________ 4. What strategies will you use to achieve your vision? (State only 3) a.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________ b.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________

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c.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________

5. Which lessons would you like to share with others? a.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________ b.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________ c.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________

6. Do you have any other motivation for why your project should be selected for the study? Interesting/ innovative/different etc? a.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________ b.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________ c.______________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________

-----------------------------------------------------------------------------------------------------------Name of person filling in the questionnaire: 96

-----------------------------------------------------

Signature -------------------------

Designation/Position/Title in the programme/project: -------------------------------------------------------------------------

Date: -----------------------------------------------------------------Official Stamp of the Project

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CHESTIONAR 1. Detalii despre Institu ie / Proiect Funda ia ngerii Speran ei Lugoj / proiect Centrul de Zi

Nume:

Adres : Str. Ion Vidu nr. 17, 305500, Lugoj, jud Timi Persoan de contact: Director executiv ing. Ioan Valcan

Telefon: 0256 351152; Tel/ fax: 0256 355456 Email: fislg@home.ro, islg@home.ro Tip de agen ie (institu ie, ONG, etc.): ONG Data nfiin rii: 22 iunie 1994. Numele directorului de proiect: Ioan Valcan Finan atori: Ini ial timp de 2 ani i 3 luni - Romanian Angel Appeal Bucuresti Londra. In prezent: 5. Consiliul local i Consiliul Jude ean. 6. Sponsor: Organiza ia german Hilfe fr Kinder dl. Hubertus Gollnick din Timi oara. 7. Sponsori: Forumul de cooperare Romnia Danemarca i Demokratisk Forum Rumaenien dl. Ole Winther Sorensen. 8. Sponsori: S.C. Procter& Gamble . S.C., Timisul Lugoj, S.C. Ioschici S.R.L., S.C. I nterspitzen S.R.L. Lugoj si altii. 3. Informa ii generale despre proiect:

7. Care sunt obiectivele generale ale proiectului? 1.1. Transport zilnic al asista ilor de la domiciu la Centru i retur. 1.2. Recuperarea i reabilitarea persoanelor cu dizabili i. 98

1.3. Inser ia sau integrarea socio-profesional . 1.4. Protec ia i reprezentarea persoanelor cu dizabili i. 3. Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere, etc).

Activitatea Programe de terapie: cognitiv , psihomotric , terapie de expresie, terapie ocupa ional (ergoterapia), ludoterapie, autonomie personal i social . Program de educa ie Portage.

Obiective specifice Recuperarea i reabilitarea asista ilor

Rezultate ob inut Comunicare i socializare mai bun , consolidarea unei autonomii personale i sociale. Un num r de 14 asista i care au frecventat Centrul de Zi, sunt elevi n coal normal . Insu irea tehnicilor de lucru i executarea unor obiecte n atelierele men ionate. 40 de asista i au participat la cele 8 serii de cursuri a 6 s pt mni, organizate pn n prezent.

Preg tirea pre colar n vederea colariz rii n clase normale sau speciale a unor asista i. Formarea unor abilit i manuale.

Terapie ocupa ional lucrativ n ateliere de esut covoare n nod persan, tmpl rie lemn, mecanicenergetic. Programul Micii buc tari.

Formarea unor abilit i gastronomice n vederea preg tirii pentru o via independent .

Programe recreative, sportive Imbog irea cuno tin elor i organizarea unor excursii generale despre mediul nconjur tor, relaxarea i o mai mare ncredere n 99

Organizarea de excursii tematice cu autocarul, n locuri pitore ti

for ele proprii, din jude ul Timi dezvoltarea comunic rii i jude ele cu persoanele din mediul limitrofe. inconjur tor. 3. Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m svreferi i la criteriile de mai jos). mbun t iri observate Prin activit ile organizate s-a observat o mai mare ncredere n for ele proprii, sentimentul propriei valori, prin realizarea unor bunuri materiale, crearea unui climat de siguran i afec iune n mediul n care tr iesc; sunt excluse abuzurile de orice fel asupra copiilor i tinerilor, n propriile familii sau din partea persoanelor ce au contact cu ei. Rela ii interpersonale: Realizarea programelor de terapie a dus la o mai Rela ii de prietenie, bun comunicare ntre ei i salaria ii Centrului, safec iune, intimitate, cu au nt rit sentimentele de afec iune i intimitate familia, colegii, vecinii, (exemple n acest sens sunt 4 c snicii, planning prietenii, rela ii sexuale; familial). Sa realizat o mai mare deschidere fa de colegi, s-a stabilit confiden ialitatea i implicarea n rela ii sociale. Activit i de educa ie igienico-sanitar intim . Protec ie sexual . Bun stare material : Ajutoare materiale din partea Funda iei Obiecte, proprietate, nevoi (mbr c minte, lemne de foc, alimente, mobilier, materiale (bani, locuin , repara ii la locuin e), hran zilnic pentru to i hran , haine, utilit i, etc.), asista ii, transportul zilnic de la domiciliu i retur. loc de munc , activitate Ob inerea unui loc de munc de c tre 2 asista i, satisf c toare; repara ii ntr-o locuin ob inut de c tre un asistat mpreun cu voluntarii Funda iei. Amenajarea unei locuin e pentru 6 asista i - la Ferma Agricol Protejat - care se autogospod resc, coordona i de personal de specialitate, n vederea consolid rii experien ei pentru o via independent prin formarea acelor abilit i necesare vie ii independente. Programe de terapie: cognitiv , psihomotric , Dezvoltare personal : Educa ie i terapie de expresie, terapie ocupa ional abilitare/reabilitare, activit i (ergoterapia), ludoterapie, autonomie personal i planificate, sprijin pentru social . Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic, emo ional, sexual; 100

utilizarea tehnicii moderne (telefon, PC, lift, interfon, etc.);

Operare pe calculator, kinetoterapie, logopedie, meloterapie. Orientarea n spa iu i folosirea tehnicii moderne. Organizarea unor concursuri/ ntreceri n realizarea unor obiective (abilit i manuale, comunicare, sport, muzic , dans). Bun stare fizic : Starea Dezvoltarea autonomiei personale (mbr cat, s n t ii, satisfac ie, hran , consum hran , toalet , igiena personal , deplasare, activit i cotidiene (mbr cat, etc.). consum hran , toalet , igien Programe de activit i i asisten medical , personal , deplasare, etc.); tratamente curente, activit i de investigare, diagnosticare 6 tratamente de medici speciali ti. Autodeterminare : Decizii Independen personal n ceea ce prive te personale, controlul propriei adoptarea unor decizii n diverse domenii, vie i, selectarea alternativei consultarea salaria ilor de c tre asista i. dorite; Incluziune social : Mediu Participarea i implicare social n diferite ac iuni nconjur tor stimulativ i realizate n plan comunitar, nu doar in calitate de prietenos, sisteme de sprijin spectator, ci i de interpret i participant activ comunitar, participare i (ac iuni sportive, spectacole, participarea la implicare expozi ii i programe artistice). social /comunitar ; Crearea unui climat familial, de ncredere i afec iune ntre membrii colectivului de asista i. Drepturi: Absen a Participarea la toate ac iunile, n func ie de puterea comport rii discriminatorii i aptitudinile fiec ruia, consolidarea ncrederii n de orice fel, lipsa temerilor puterile proprii (sentimentul), prin ncurajarea fa de mediul nconjur tor; realiz rilor i integra rii socio-profesinale, care au contribuit la diminuarea discrimin rii.

4.

Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program? Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani C i beneficiari a i avut pn n prezent? 30 23 19 20

8. Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite. 101

Num r de Tipul adul i cu dizabilit dizabilitate ii u oar

M/F

Num r de copii cu dizabilitate u oar

Num r de adul i cu dizabilitate moderat

Num r de copii cu dizabilitate moderat

Num r de adul i cu dizabilitate sever

Num r de copii cu dizabilitate sever

M 1 13 5

Fizic vizual mental Neuropsi hic asociat social TOTAL 92 M 49 / F 43

M 1

F 1 9 2

7 8

7 1

4 3

7 3 1

3 5

2 8

1 1 19 15 8 7 11 8 3 12

3. Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant?

El reprezint alternativa optim la institu ionalizare, solu ia sprijinului consistent al copiilor i tinerilor ce tr iesc n familii sau independent, pentru a putea supravie ui i a se ncadra socio-profesional. Centrul de Zi mbin suportul statului romn cu al beneficiarului, precum i varianta viabila parteneriatului public-privat, ntre o institu ie public si un ONG. 5. Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? 10 ani

2. Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): 17 miliarde lei din care: a. Bugetul local contribuie cu 25 (%) b. Bugetul statului contribuie cu 60 (%) c. Sponsorii interni contribuie cu 6 (%) d. Donatorii externi contribuie cu 9 (%) 3. Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: 102

Contribu ia A crescut Bugetului local X Bugetului statului X Sponsorilor X interni Donatorilor externi (pune i un x n rubrica convenabil !)

A sc zut

S-a oprit

4. Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)? Cheltuielile curente privind func ionarea Centrului de Zi sunt suportate de bugetul local, circa 65% i 35% de c tre bugetul de stat (fondul de echilibrare). 6. De ce este proiectul relevant/semnificativ?

1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a. A deschis drumul c tre preluarea finan rii de catre STATUL ROMAN a Centrului de Zi. b. Calitatea, diversitatea i noutatea absolut a serviciilor de asisten i protec ie social oferite persoanelor cu dizabilit i. c. Gratuitatea serviciilor.

d. Imbun t irea de la lun la lun a condi iilor de desf urare a asisten ei si protec iei sociale, precum i a condi iilor de munc n cadrul Centrului, datorit profesionalismului salaria ilor i voluntarilor Funda iei.
e. Rezultatele practice ob inute n terapia ocupa ional lucrativ n urma c rora au rezultat produse bunuri de consum concrete, prezentate deseori n standuri proprii n cadrul Expozi iilor Camerei de Comer , Industrie i Agricultur a Jude ulu Timi . 2. Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i?

a. Lipsa de spa iu pentru g zduirea serviciilor de asisten i protec ie social . Am efectuat demersuri pentru ob inerea de noi terenuri cu cl diri i n bun m sur am ob inut.

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b. Cl direa atribuit ini ial nu a corespuns din punct de vedere tehnic, metodologic i al dot rii destina iei institu iei de asisten social , necesitnd foarte mari lucr ri i importante fonduri pentru lucr ri de repara ii i amenaj ri constructive. S-au ntocmit numeroase proiecte i cereri de finan are (aproape 300 ), din care peste 100 au fost acceptate.
c. Personal insuficient i cu altpreg tire dect cea de asisten i protec ie social . S-au recrutat i angajat noi salaria i sau voluntari, dupcaz, i s-au trimis la cursuri de preg tire i de perfec ionare a preg tirii profesionale. 9. Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. Ne vom axa pe parteneriatul public-privat, colaborarea cu Primaria i Consiliul local al municiului Lugoj, cu alte institu ii i ONG-uri din tar i str in tate, elaborarea de proiecte de finanare. 10.Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3) a. Extinderea parteneriatului public-privat i colaborarea cu autorit ile locale. b Redactarea unor proiecte n parteneriat cu ONG-uri din ar i din comunitatea european . c. Redactarea de E-mailuri i scrisori trimise la diverse organiza ii din str in tate pentru atragerea de sponsori i donatori. 11.Care sunt experien ele pe care a i dori s le mp rt i i altora? a. Preocuparea pentru aspectele practice ale asisten ei i protec iei sociale, cu focalizarea pe beneficiarii seviciilor noastre. b. Modalit i privind dezvoltarea i modernizarea capacit ii de oferirea de servicii c. Realizarea i derularea parteneriatului public-privat. 12.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a. A fost unul din primele Centre de Zi din Romnia, cu o bogatpaletde servicii, dup model occidental. 104

b. Este unul din Centrele care a pus n prim plan recuperarea i reabilitarea prin terapie ocupa ional lucrativ .
c. Realizeaz produse-bunuri de consum, cu care particip n mod curent la manifest ri expozi ionale, locale , jude ene si interna ionale.

Numele persoanei care a completat chestionarul: Ed. Ro u Cornelia Consilier Vanana Corina Valcan Poi ia n cadrul proiectului / programului: Director Ing. Ioan Valcan Data: 18.11.2004 Semn tura: --------------------------- tampila

V MUL UMIM!

105

CHESTIONAR 1. Detalii despre Institu ie / Proiect FUNDATIA ALPHA TRANSILVANA 540517, Tg-Mures, Aleea Vrancea, nr.1, Laura POP, manager program Atrium 0265/257.057 fax 0265/257/542 atrium@alphatransilvana.ro , office@alphatransilvana.ro

Nume: Adres :

Persoan de contact: Telefon / fax: Email:

Tip de agen ie(institu ie, ONG, etc.): Organizatie non-guvernamentala, non-profit Data nfiin rii:
Hot rrea nr. 3261 din data de 17 martie 1992, pronun at de Judec toria Tg. Mure . Certificat de nscriere n Registrul asocia iilor i funda iilor 15/1992: ncheierea civil nr. 3261, Sentin din Camera de Consiliu din 17 martie 1992. Certificat de nscriere a persoanei juridice f rscop patrimonial Nr. 27 din data de 18 iunie 2003 eliberat de c tre Instan a Judec toria Tg.-Mure .

Numele directorului de proiect: Laura POP, manager program Atrium Finan atori ai programului 9. SOWECO NV, Olanda ,compania sociala, cu peste 1700 de persoane cu disabilitati angajate in sistemul de munca cu persoanele cu disabilitati. Sustinatorul finaciar principal al programului dar si cel care asigura transferul de Know-how si actioneaza la nivelul managementului organizational.

10.STICHTING Tg-Mures, Olanda organizatie nonguvernametala care sprijin logistic si infrastructural activitatile programului Atrium. 11.Persoane fizice si juridice atit din Romnia cit si din strainatate care doneaza sau sponsorizeaza punctual anumite activitati din cadrul programului 4. Informa ii generale despre proiect:

13.Care sunt obiectivele generale ale proiectului? 106

Dobndirea i mbun t irea preg tirii profesionale a tinerilor cu disabilit i prin: responsabilitatea produsului final att calitativ ct i cantitativ deprinderea execut rii unor anumite faze de lucru mbun t irea calit ii preg tirii profesionale antrenarea ntr-o form de munc respectarea normelor i valorilor socio-morale cre terea sentimentului de independenta si utilitate, precum si apartenen a la comunitate

14.Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere, etc.) Activitatea Obiective specifice Rezultate ob inute
Testarea i evaluarea profilului psiho-aptitudinal
utilizarea unor baterii de teste care ajuta la conturarea pofilelor beneficiarilor atit d.p.d.v. al abilitatilor cit si a celor sociale depistarea restantului functional si a paramentrilor in care acesta poate fi imbunatatit si exploatat Testarea i evaluarea a peste 60 de tineri cu disabilit i; Efectuarea de anchete sociale pentru 60 de persoane; Imbunatatirea sistemului de testare prin dezvoltarea profilului vocational, fise de observa ie lunara, evaluari Dezvoltarea abilit ilor de Implicarea directa a comunicare i socializare, tuturor beneficiarilor formarea i respectarea in cadrul Campaniei de valorilor i normelor socio- sensibilizare a opiniei morale prin implicarea tinerilor publice vis-a vis de n diferite activit i: problematica Training-uri pentru dezvoltarea persoanelor cu autonomiei proprii (igien disabilitati Zillele personal , efectuarea IMPACT cump r turilor) si pentru Participarea la concert autocunoa tere de binefacere Team-building: serbarea zilelor 3 tineri din cadrul de na tere, jocuri interactive, atelierelor au reprezentat tara organizarea de excursii Colaborare i participare la noastr la proiectul iat de diverse manifest ri, ateliere de european ini EASPD organizatie lucru, concursuri tematice, umbrela , Belgia- in campanii de sensibilizare cadrul proiectului Europa a place to live , unde reprezentantii nostrii au desfasurat activitati alaturi de alte nationalitati De asemenea , un reperezentant Atrium a fost invitat sa participe la manifestarea Open Days Soweco, Olanda-partenerul direct si principal sustinator al activitatilor

Socializarea tinerilor

107

desfasurate in cadrul centrului

Integrare socio-profesionala

Stabilirea de contacte cu institu iile care lucreazn domeniu: AJOFM, Inspectoratul colar, DJAS Elaborarea profilului vocational Medierea locurilor de munc ntre angajator- angajat Suport n ntocmirea documenta iei referitoare la angajare Urm rirea evolu iei la locul de muncprin stabilirea de contacte cu angajatorul sau direct cu persoanele angajate

Preg tirea profesional

Dezvoltarea de abilitati profesionale prin implicarea in activitati si faze de munca specifice atelierelor existente: atelier de croitorie, artizanat si legatorie

Participarea a 4 beneficiari din cadrul atelierului de ambalare in proiectul Arata ca-ti pasa contactati pentru a presta munca sezoniera. Ace tia s-au descurcat cu succes al turi de tinerii care proveneau din scoli normale Angajarea a ase tineri, fo ti beneficiari ai atelierului de operare pe calculator i croitorie, in cadrul unui supermarket local, ocupnd posturi de facturier, responsabili raion i ngrijitor salsi medierea a patru locuri de munca sezoniere pentru patru dintre beneficiarii proiectului Obiecte finite ob inute n urma activit ilor din cadrul atelierelor: articole textile, articole din carton i hrtie,texte redactate, materiale informative articole artizanale. Aceste obiecte de regula se comercializeaza in cadrul expozitiilor organizate de Craciun, 1Martie, Paste. Sumele provenite sunt reinvestite in materie prima si imbunatatesc activitatile din cadrul atelierelor. Formarea responsabilit ii produsului final att calitativ, ct i cantitativ, crendu-se astfel, posibilitatea de a lucra n parametrii reali ai comenzilor;

108

15. Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m svreferi i la criteriile de mai jos) Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic, emo ional, sexual; Rela ii interpersonale: Rela ii de prietenie, afec iune, intimitate, cu familia, colegii, vecinii, prietenii, rela ii sexuale; mbun t iri observate -atit centrul cit si familia reprezint puncte de protectorat in acest sens existind un mediu stabil emo ional si fizic. Ace tia isi exprima p rerea sau acceptarea unor situa ii favorabile, sau nefavorabile - s-au legat noi prietenii atit in interiorul organiza iei cit si cu alti beneficiari din alte organizatii - se ajuta reciproc atit in relatiie de munca dar si in cele sociale( ajutor la transport, mbr care, alimentare, etc) - s-au remarcat expunerea preferin elor si afilierilor c tre persoanele din grup si din organizatie si din exterior - participa cu interes la trainigurile care au ca tema educa ia sexuala si respecta informa ia primita - reactioneaza cu atitudini de ncredere vis-a vis de prezentarea proprie persoane - majoritatea beneficiarilor tiu sa-si administreze bunurile si se lucreaz in acest sens pentru dobindirea unei independente, o parte insa dintre ace tia inca necesita suport si ndrumare - si-au format atitudinea fata de munca calitativa cit si cantitativa, de norma si de statutul de angajat( prin training si prin relatarea experien elor celor incadrati deja in munca) -cei care au reu it sa fie angaja i au ajuns si o independenta financiara insa nu totala dat fiind faptul ca ace tia locuiesc cu familiile ; gestionarea banilor se face mpreuna cu familia sau apartinatorii - s-a remarcat imbunatatirea abilitatiilor si deprinderilor atit manuale cit si cele de tip social tot datorita cursurilor si traingurilor profesionale si sociale frecventate cu regularitate de beneficiari si cuantificate prin scale de valori si profile sociale si profesionale - referitor la mediul fizic nconjur tor data fiind dotarea dar centrului( computere , etc...) si participarea 109

Bun stare material : Obiecte, proprietate, nevoi materiale (bani, locuin , hran , haine, utilit i, etc.), loc de munc , activitate satisf c toare;

Dezvoltare personal : Educa ie i abilitare/reabilitare, activit i planificate, sprijin pentru utilizarea tehnicii moderne (telefon, PC, lift, interfon, etc.);

Bun stare fizic : Starea s n t ii, satisfac ie, hran , activit i cotidiene (mbr cat, consum hran , toalet , igien personal , deplasare, etc.); Autodeterminare : Decizii personale, controlul propriei vie i, selectarea alternativei dorite; Incluziune social : Mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social /comunitar ; Drepturi: Absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor;

la diverse manifestari in comunitate acestia prezinta un minim de informatie a mediului si de utilitate a acestora - fiecare beneficiar are formate deprinderile de baza: a se hrani, a se imbraca sau a efectua toalaeta proprie ,o parte dintre acestia inca mai au de insusit anumite dintre deprinderi dar majoritatea sunt in curs de deprindere;cele mai problematice sunt cele de deplasare si cea de a gati pentru sine; - beneficiarii centrului datorita determinarii si modului de viata suportiv si de protectorat din cadrul centrului isi pot exprima parerea si alegerea neifluentabili insa la un nivel de decizii minore nu majore - centru ofera un mediu stimulativ insa s-a insistat in a iesi in comunitate cu orice ocazie: vezi: campanie, concursuri, caravane, activitati de ingrijirea mediului, excursii, tocmai pentru ai invata si a le insufla sentimentul de apartenenta la grup si puterea de autoreprezentare - s-au remarcat progrese in ceea ce priveste acceptarea semnenului tau indiferent de nationalitate si deficienta , exista insa in lucru limita spatiului si a timpului. - deplasarile in strainatate sau in alte orase ale unora dintre beneficiari , fara apartinatori doar cu instructorii a dat rezultate foarte bune , fara nici o problema de adaptare.

4.

Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program?
In momentul de fata , programul Atrium are urm torii beneficiari:

Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani

C i beneficiari a i avut pn n prezent? 5 13 3 3

110

2.Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite.
Num r de Tipul adul i cu dizabilit dizabilitate ii u oar
M/F
neuropsihic

Num r de copii cu dizabilitate u oar

Num r de adul i cu dizabilitate moderat

Num r de copii cu dizabilitate moderat

Num r de adul i cu dizabilitate sever

Num r de copii cu dizabilitate sever

M
3

F
5

F
7

M
1 1

F
1

M
3

F
1 1 1

mental asociat

5.

Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant?

Dat fiind faptul ca toate statisticile locale arata lipsa centrelor de zi sau ergoterapeutice care sa aiba drept grup tinta persoanele tinere si adulte cu disabilitati este oportun sa se sesizeze necesitatea a unor astfel de centre si in acealsi timp remarcarea acelor centre active , infiferent de stadiul de dezoltare care au ca si grup tinta persoane cu disabilitati adulte.
Un alt argument este cel al nivelului si standardele la care se lucreaza in existentul centru ATRIUM. Personalul , desi putin la numar, cu care se lucreza , este specializat si continuu pregatit pentru a face fata evolutiei centrului atit dpdv al activitatilor cit si dpdv al rezultatelor preconizate. Odat cu trecerea c tre via a de adult este necesara asigurarea unor altor tipuri de servicii specializate tinerilor cu nevoi speciale, de aceea o importan deosebit o constituie informarea care pune la dispozi ia beneficiarilor direc i i indirec i datele tehnice ale serviciilor de angajare, oferte, legisla ie, si orientarea acestor tineri prin consiliere individual , antrenarea n ateliere de lucru i munc reala si instruirea profesionala propriu-zisa.

Tinindu-se cont ca s-a pornit de la adaptarea unei structuri olandeze in munca cu persoana cu disabilitati trebuie amintit faptul ca acest centru are o metodologie de lucru bine structurata tocmai pentru a veni in intimpinarea functionalitatii si operationalizarii activitatilor zilnice prestate in favoarea acestei categorii.
Metodologie de lucru

In vederea desfasurarii activitatilor propuse s-au stabilit urmatoriii pa i metodologici, de la inceperea activitatilor pina la derularea zilnica: a) metodologia de selec ie a beneficiarilor si a instructorilor care consta in :

111

mediatizarea serviciilor oferite analiza si consultarea bazei de date referitor la poten ialii beneficiari efectuarea de anchete sociale realizarea primului contact cu beneficiarii programarea pentru evaluarea primara

b) metodologia de lucru in cadrul procesului de evaluare psiho - aptitudinala si de instruire Evaluarea primara psiho aptitudinala consta in: Realizarea de anchete sociale la domiciliul fiec rui poten ial beneficiar in vederea stabilirii primului contact cu mediul de provenien a, nivelul socio-economic, cultura si istoricul familiei Aplicarea unei mape de testare primara care se soldeaz cu inregistrarea indicelui aptitudinal, QA, a beneficiarului concomitent cu un prim interviu prim interviu Selec ia primara comparativ cu indeplinirea criteriilor de selec ie: virsta , grad de disfunctionalitate, rezultatele QA, concluziile interviului Intocmirea dosarului de primire in centru si includerea in program Testare in vederea conturarii profilului abilitatilor manuale se utilizeaza testul Ruward, standardizat european, teste vocationale si de orientare individuale,

Orientare catre unul dintre ateliere existente, in concordanta cu abilitatile si

capacitatile beneficiarului. Aceasta orientare nu este definitorie, beneficiarul avind posibilitatea de a se transfera in cadrul celorlalte ateliere chiar si numai pentru o perioda determinata de realizarea unei comenzi . Monitorizare prin fise de observatie lunara , grafice care pun in evidenta evolutia sau involutia atit la nivel de deprinderi tehnici de lucru cit si la nivel de interrelationare in grup a beneficiarului

Desfasurarea acestei activitati se realizaza conform specificului fiecarui atelier pe doua module, insistindu-se in executia practica , pornita de la confectionari primare, manuale pina la utilizarea cu indeminare a uneltelor si masinilor de lucru.
5. Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul?
Programul Atrium functioneaza de 2 ani si 5 luni. Debutul acestui program a fost in Iulie 2002.

5. Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): cca. 12.000 Euro din care: a. Bugetul local contribuie cu __________ (%) _____ b. Bugetul statului contribuie cu ________ (%) _____ c. Sponsorii interni contribuie cu 5(%)

d. Donatorii externi contribuie cu 95 (%) 6. Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: Contribu ia Bugetului local A crescut 112 A sc zut S-a oprit

Bugetului statului Sponsorilor interni Donatorilor externi (pune i un x n rubrica convenabil !)

X X

7. Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)?

In acest an, compania Soweco NV, Olanda mpreuna cu Funda ia Alpha Transilvana au ini iat deschiderea unui atelier protejat numit TIMURAL , care va functiona inafara Tg-Muresului , la 17Km distanta si care are ca scop primordial incadrarea in activitati lucrative, platite a persoanelor cu disabilitati , pregatite pentru munca. Acest atelier protejat, TIMURAL, va determina continuitatea programului si va fi elementul care asigura durabilitate serviciilor din cadrul Centrului de Orientare si Preg tire Profesionala ATRIUM, fiind veriga de leg tura a serviciilor livrate de catre fFundatia Alpha Trasnsilvania. Colaboarea cu cele patru membre ale Fundatiei pentru promovarea dreptului la Munca a Persoanelor cu Disabilitati in vederea creerii unei retele la nivel national care sa promoveze astfel de servicii alternative.

6.

De ce este proiectul relevant/semnificativ?

1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a . Necesitatea unui astfel de centru in zona Tg-Mures, statisticile aratind lipsa unor astfel de centre
care sa se ocupe de persoana adulta cu disabilitati. b. Beneficiari ai unui transfer de asistenta/suport tehnic, transfer de cunostinte si Know-how acordat prin intermediul proiectului Take Five, Matra Project finantat de Ministerul Afacerilor Externe, Olanda. c. Promovarea dezvolt rii unui astfel de centru prin crearea posibilitatii de replicare in centrele cu care se dezvolta o colaborare in retea, dorindu-se gasirea unei unitati in conjucturi spatio-temporale si economice diferite. d. Modelul profesional al abord rii tipologiei de servicii oferite. Perfec ionarea continua si colaborarea permanenta cu alte organiza ii din sistem. Metodologia de lucru( manualul de proceduri ) care confer imaginea structurala a centrului, incepind de la primul contact cu potentialul beneficiar pina la testare, orientare, evaluare abilitati sociale, etc.... e. Devotamentul / Implicarea personalului in solu ionarea tuturor problemelor ap rute, atit de ordin administrativ cit si de ordin profesional, precum si modul de promovare si dezvoltare a unor astfel de servicii. Spiritul de echipa bine dezvoltata la nivel de organizatie.

2.Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i? a.

Imposibilitatea de a accesa fonduri locale pentru derularea programului. b. Mentalitatea atit a familiei cit si a societatii. Beneficiarii ini iali cit si familiile acestora au fost destul de greu de determinat in a alege frecventarea centrului sau a ramine acas ! c. Colaborarea cu angajatorul s-a dovedit a fi destul de greoaie si fara pirghii concrete in a demara contactarea acestora la nivel / poten ial angajator local.

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3.Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani.
Va exista posibilitatea ,ca in doi ani de zile sa: creasca numarul beneficiarilor, si constant cu acesta si numarul angajarilor persoanelor cu disabilitati, sa se imbunatateasca si sa se diversifice serviciile oferite, sa creasca gradul de independenta al beneficiarilor .

4.Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3)
a. Largirea numarului de beneficiari cooptind in activitati si persoanele marginalizate din mediul rural care nu au acces la cultura si informatie devenind persoane cu disabilitati sociale. b. Dezvoltarea de activitati noi prin crearea de noi tipuri de ateliere dat fiind faptul ca spa iul ne va permite extinderea tipurilor de activitati. c. Dezvoltarea unui protocol de colaborare la nivel local intre autoritatile care activeaz in domeniul social si organizatie

5.Care sunt experien ele pe care a i dori s le mp rt i i altora?

a. Parteneriatele externe care se bazeazpe o filosofie si o cultura a respectului si increderii reciproce odata ajungi in pragul derularii de activitati comune si nu pe o relatie ierarhica si de vasalitate. Experienta noastra spune ca sunt devotati in ceea ce isi propun sa realizeze! b. Beneficiarii si instructorii voluntari care odata ajungi in centru au ajuns la un nivel de autodeterminare in activitatile intreprinse iti creaza sau iti sugereaza ideea de apartenenta la grup si la regulile sale de convivialitate. c. Incadrarea in munca a persoanelor cu disabilitati ca si experien a mai pu in pozitiva dar care trebuie semnalata deoarece nu este vorba despre un simplu concept ci de un ntreg sistem care inca necesita input major din partea societatii .Insa procentajul mic pe care l-am ncadrat in munca, pe pia a muncii libere, este un real succes al unor astfel de centre precum Atrium.

6.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a.
Prezinta potential creativ dovada fiind produsele finale ale tinerilor cu disabilitati realizate in ateliere de lucru. b. Este un model cu posibilitate de replicare datorita sistemului de operationalizare si monitorizare a fiecarei activitati si a fiecarui beneficiar.

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Numele persoanei care a completat chestionarul: Laura Mona POP --------------------------------------------------Pozi ia n cadrul proiectului / programului: Manager program ------------------------------------------------------------------------10 Noiembrie 2004 Data: -----------------------------------------------------------------Semn tura: --------------------------- tampila

V MUL UMIM!

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CHESTIONAR 1. Detalii despre Institu ie / Proiect

Nume: Star Of Hope Romania Adres : str.Arcu, nr.24, bl.Z15, tr.I, et.1, ap.4, Iasi, cod 700133 Persoan de contact: Aurora Vatamaniuc Telefon / fax: +40232-216253; +40232-215161 Email: starofhope@from.ro Tip de agen ie(institu ie, ONG, etc ) Fundatie-ONG Data nfiin rii: 27 02 1998 Numele directorului de proiect: Gabriela Raducanu Finan atori: 12.Agentia Suedeza de Dezvoltare Internationala ( SIDA ) 13.Star of Hope International, Suedia 6. Informa ii generale despre proiect:

16.Care sunt obiectivele generale ale proiectului? Integrarea copiilor cu dizabilitati in comunitate. Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere, etc.)

4.

Activitatea 1.Organizarea si dezvoltarea cursului de reabilitare bazata pe comunitate

Obiective specifice Oferirea de cunostinte necesare in vederea refacerii abilitatilor fizice, psihice si emotionale ale copilului Imbunatatirea vietii copilului Imputernicirea parintilor

Rezultate ob inute Integrarea copiilor in societate, in invatamintul de masa: 3 copii integrati in gradinita normala si un copil in invatamintul de masa

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2. Curs pentru formarea asistentilor maternali profesionisti pentru copil cu dizabilitati

Imbunatatirea cunostintelor Reabilitarea copiilor

Asistentii maternali au initiativa in recuperarea copilului

3.Familie de weekend pentru copiii din centrul de plasament Falciu 4.Evaluarea copiilor cu dizabilitati, programe individuale de reabilitare

Socializarea copiilor Schimbarea mentalitatii comunitatii fata de copilul cu dizabilitati Reabilitarea copiilor cu dizabilitati

50% din copii au fost luati in familie S-au inregistrat progrese in dezvoltarea copilului ( inregistrate in fisele individuale ) Intarirea relatiilor dintre asistentii maternali Intarirea relatiilor dintre asistentii maternali si asistentii sociali, angajati ai fundatiei Star Of Hope Romania In urma acestor intilniri atit copiii cit si familiile acestora s-au imprietenit Acceptarea copiilor cu dizabilitati de catre copii sanatosi

5.Intilniri periodice cu asistentii maternali profesionisti

Consilierea/formarea grupurilor de suport

6. Organizarea serbarilor cu diferite ocazii (1 iunie-Ziua copilului, serbarea zilelor de nastere) la care au participat si copii fara deficiente

Socializarea copiilor Participarea copiilor cu dizabilitati la viata comunitatii

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5.

Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m svreferi i la criteriile de mai jos) mbun t iri observate Integrarea copiilor in familie a avut ca rezultat diminuarea efectelor institutionalizarii; existenta unui mediu securizant, dobindirea sentimentului de incredere in sine, de apartenenta; diminuarea anxietatii, a sentimentului de frica; Inchegarea relatiilor cu familia asistentului maternal (sot/sotie, si a ceilalti copii)si cu familia largita a acesteia Inchegarea unor relatii de prietenie cu alti copii atit cu nevoi speciale cit si cu copii fara dizabilitati Dreptul la intimitate: copilul are posibilitatea sa aiba un loc al lui, camera proprie, etc Satisfacerea nevoilor de baza, asigurarea hranei zilnice, a imbracamintei

Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic, emo ional, sexual; Rela ii interpersonale: Rela ii de prietenie, afec iune, intimitate, cu familia, colegii, vecinii, prietenii, rela ii sexuale; Bun stare material : Obiecte, proprietate, nevoi materiale (bani, locuin , hran , haine, utilit i, etc.), loc de munc , activitate satisf c toare; Dezvoltare personal : Educa ie i abilitare/reabilitare, activit i planificate, sprijin pentru utilizarea tehnicii moderne (telefon, PC, lift, interfon, etc.); Bun stare fizic : Starea s n t ii, satisfac ie, hran , activit i cotidiene (mbr cat, consum hran , toalet , igien personal , deplasare, etc.); Autodeterminare : Decizii personale, controlul propriei vie i, selectarea alternativei dorite; Incluziune social : Mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social /comunitar ;

14 copii folosesc telecomanda de la TV, 2 folosesc telefonul Exista activitati planificate 3 copii au fost integrati in gradinita normala si un copil in invatamintul de masa

S-a imbunatatit starea de sanatate, au fost diminuate efectele institutionalizarii, au invatat sa se imbrace/dezbrace singuri; se hranesc singuri; folosesc toaleta Toti copii erau mici, sub 12 ani, in imposibilitate a de a lua decizii cu privire la viata proprie. Aproape toti copiii pot comunica alternativa dorita dintr-o multime de posibilitati Comunitatea a inceput sa se implice in problematica copiilor cu dizabilitati: primaria a pus la dispozitie o sala pentru intilnirea asistentilor maternali; scoala si gradinita au organizat activitati la care au fost invitati copiii cu nevoi speciale, colaborarea cu acestea in vederea integrarii lor in 118

Drepturi: Absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor; 4.

invatamintul de masa Schimbarea mentalitatii comunitatii prin activitatile desfasurate in cadrul acesteia : vizite in familii, la scoala, la gradinita, iesiri in aer liber, la cumparaturi

Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program? Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani C i beneficiari a i avut pn n prezent? 2 asistenti maternali 13 asistente maternale 7 baieti 8 fete

17.Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite.
Num r de Tipul adul i cu dizabilit dizabilitate ii u oar
M/F

Num r de copii cu dizabilitate u oar

Num r de adul i cu dizabilitate moderat

Num r de copii cu dizabilitate moderat

Num r de adul i cu dizabilitate sever

Num r de copii cu dizabilitate sever

Deficient a mentala severa Paralizie cerebrala Deficient a mentala usoara

5 1 1

5 1 2

3. Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant? 119

 Familia a fost valorificata ca resursa importanta in reabilitarea copilului. Proiectul a reusit, in parte, sa schimbe atitudinea membrilor comunitatii fata de copilul cu dizabilitati, sa integreze aceasta problema in comunitate Dezvoltarea parteneriatelor cu autoritatile locale Curajul dobindit de asistentul maternal in tot acest timp Initiativa din partea asistentilor maternali de a se organiza intr-o asociatie,inceperea demersurilor in aceste sens. Abordarea profesionista si interdisciplinara a problematicii copilului cu dizabilitati

5.

Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? De 3 ani: 2001-2004 8. Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): 350 000 SEK ( buget mediu annual) din care: a. Bugetul local contribuie cu __________ (%) _____ b. Bugetul statului contribuie cu ________ (%) _____ c. Sponsorii interni contribuie cu________ (%) _____ d. Donatorii externi contribuie cu 100 % 9. Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: Contribu ia A crescut Bugetului local Bugetului statului Sponsorilor interni Donatorilor externi (pune i un x n rubrica convenabil !) A sc zut S-a oprit

10.Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)? Initiativa asistentilor maternali de a se intilni, de a se vizita, activitati de reabilitare (asistentul maternal continua programul de reabilitare acasa). Sprijinul oferit de catre primarie prin alocarea unui spatiu. 120

6.

De ce este proiectul relevant/semnificativ?

1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a. implementarea proiectului intr-o comunitate rurala (relatiile intre membrii ei sint mai usor de intretinut) b. buna colaborare cu autoritatii locale (Directia Judeteana de Protectie a Copilului Vaslui, Primaria, scoala, gradinita); au raspuns pozitiv la toate solicitarile c. evaluarea si instruirea profesionista a asistentilor maternali care au dorit sa se implice activ in reabilitarea copiilor pe care i-au luat in plasament d. adaptarea continua din partea organizatiei noastre la nevoile indentificate ale copiilor, ale comunitatii e. serviciile de reabilitare in familie oferite copiilor cu dizabilitati din asistenta maternala 2. Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i? a. Mentalitatea de care ne-am izbit la inceputul proiectului in Falciu cu privire la copii cu dizabilitati. Am reusit sa o depasim prin desfasurarea diferitelor activitati: iesiri in comunitate, plimbari, serbari, informarea membrilor comunitatii privind nevoile copilului cu dizabilitati 18.Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. Dezvoltarea de servicii alternative la institutionalizare, integrate in comunitate pentru copilul cu dizabilitati. 19.Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3) a. Infintarea asociatiei de asistenti maternali din punct juridic. b. Incheierea unor parteneriate cu directorii de scoli/gradinite pentru integrarea unui numar cit mai mare de copii in invatamintul de masa. 20.Care sunt experien ele pe care a i dori s le mp rt i i altora? a. In comparatie cu copiii din centrul de plasament, copiii integrati in familie se recupereaza mult mai repede datorita afectivitatii si mediului familial. b. Familia isi directioneaza toata atentia si resursele pentru reabilitarea si integrarea acestor copii pe cind in centrul de plasament erau 15 copii la o singura persoana adulta c. Initiativa asistentilor maternali de a se intilni si de a lupta pentru copiii cu nevoi speciale desi nu sunt copiii lor natural. 21.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a. Existenta unui grup compact de asistenti maternali intr-o comunitate mica 121

b.Dezvoltarea serviciilor alternative integrate in comunitate in care resursa principala este familia. c. Flexibilitatea echipei/ adaptarea la nevoile copilului cu dizabilitati, ale comunitatii, ale familiei. d. Reprezinta un model aplicabil si in alte comunitati

Numele persoanei care a completat chestionarul: Samuel Ghica, asistent social Pozi ia n cadrul proiectului / programului: Coordonator proiecte judet Vaslui

Data: 3.12.2004 Semn tura: --------------------------- tampila

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CHESTIONAR 1. Date despre institu ie/ proiect: Nume: Centrul de ngrijire i de Recuperare de Zi ,, Robert Adres : Satu Mare, str. Corvinilor, nr. 18 Persoan de contact: Apan Ana Telefon/ fax: 0261768830/ 113; 0742511781 Tip de agen ie: centru de zi, n cadrul Direc iei pentru Protec ia Copilului i Asisten Social Satu Mare. Data nfiin rii: august 2002 Numele directorului de proiect: Marc Adrian Finan atori: 1. Phare, 79,25% 2. Consiliul Jude ean Satu Mare, 20,75% Men ionez c finan area Phare s-a ncheiat n iunie 2003. 2. Informa ii generale despre proiect: Care sunt obiectivele generale ale proiectului? 1. nfiin area unui Centru de ngrijire i de Recuperare de Zi pentru copiii cu nevoi speciale.

2. Asigurarea pe timpul zilei, copilului cu nevoi speciale, servicii educative, recuperatorii, socio- profesionale i recreative.
3. Oferirea de servicii educative, recuperatorii, socio- profesionale, care s duc la cre terea gradului de autonomie personala copiilor cu nevoi speciale. 4. Parteneriat prin nt rirea colabor rii cu familiile copiilor cu nevoi speciale. 5. Integrarea n comunitate a copiilor cu nevoi speciale. Descrie i pe scurt principalele activit i ale proiectului ( ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere etc. ) Rezultate ob inute ntocmirea planului de interven ie individualizat;

Activitatea Evaluare- reevaluare

Obiective specifice Cunoa terea poten ialului intelectual i fizic al fiec rui copil; 123

Activit i educativecognitive

Observarea aptitudinilor generale i specifice: cognitive, motrice, de comunicare, manualitate, imagine de sine ( conceptul de selfadvocate ), dezvoltare emo ional etc; Observarea manifest rilor rela ionale ia raporturilor cu ambian a. Cre terea nivelului autonomiei personale, dezvoltarea i men inerea deprinderilor de igien personal , hr nire, vestimenta ie, utilit i; Cre terea nivelului intelectual, mbog irea vocabularului i mbun t irea exprim rii; Cultivarea aten iei i men inerea ei pe o perioad mai lung ; Stimularea actelor volitive.

Lucrul diferen iat cu fiecare copil n func ie de poten ial i conform planului de interven ie.

Copiii cu deficien e u oare au nv at s - i fac singuri igiena personal , particip la activit ile gospod re ti, cunosc ceasul, telefonul, banii etc. , i-au mbog it vocabularul, se exprim mai corect, folosesc calculatorul pentru scris, desen, jocuri. Copiii cu deficien e medii i grave, n majoritate au nv at s se hr neasc singuri, s se spele pe mini, au nv at lucruri elementare, de la rostirea propriului nume pn la cunoa terea numerelor, culorilor, animalelor, obiectelor din jur etc.

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Ergoterapie

Participare activ a copiilor i realizarea cu ajutor a unor lucr ri deosebite prezentate i n cadrul expozi iilor organizate cu diferite ocazii, s rb tori, n incinta Centrului. Realizarea profilului voca ional la 5 copii. Art-terapie Stimulare perceptivInteres deosebit al senzorial ; copiilor, pl cere i Relaxare psihorelaxare a celor cu motorie. agita ie psiho- motorie. Ludoterapie Stimulare perceptivCopiii cu deficien e senzorial ; grave au fost capta i de nsu ire de informa ii juc riile ce produc elementare. sunete i de jocurile de construc ie; i-au nsu it minime cuno tin e despre forme, obiecte, culori. Logopedie Educarea limbajului Copiii cu deficien e verbal sau non- verbal; grave se exprim prin Dezvoltarea i semne, prin mimic , iar men inerea abilit ilor unii pot rosti 2-3 de expresie. cuvinte. Kinetoterapie Recuperare i Reducerea spasticit ii, reabilitare a progrese n educarea disfunc iilor neurocontrolului motor, motorii; coordon rii i Relaxare psihoechilibrului; motorie. Relaxarea copiilor hiperactivi. Consiliere psihologic Recuperare i Copiii respect regulile individual i de grup reabilitare a i programul Centrului, comportamentului s-au adaptat n timp i deviant; rela ioneaz pozitiv cu Oferirea unui suport personalul i cu colegii; real pentru dep irea Sunt interesa i de situa iilor de inadaptare problemele fiziologice sau a e ecurilor; ale vrstei lor. Informare i dezbatere privind problemele Stimulare perceptivsenzorial ; Identificarea unui profil voca ional pentru a oferi orientare i sprijin n vederea g sirii unui loc de munc n viitor. 125

vrstei. Consiliere parental Colaborarea cu familia Colaborare bun i n scopul continu rii foarte bun cu familiile; recuper rii i reabilit rii P rin ii vin la copilului n mediul psihologul Centrului de familial; cte ori au nevoie, Suport pentru familie n particip la edin ele scopul dep irii organizate, i problemelor mp rt esc unii altora ntmpinate cu copilul. problemele create de copiii lor. Monitorizarea mediului Observarea condi iilor Au fost vizita i to i social al copilului de trai ale copilului n copiii; majoritatea au familie; condi ii bune de trai, Prevenirea abandonului. dar exist i familii defavorizate. Activit i educativeOrientare n spa iuCopiii se simt foarte recreative timp; bine cnd sunt sco i n Cunoa terea serviciilor parc, n ora , n comunitare; excursie ( Tarna Mare, Petrecerea ct mai Noroieni, Ac ); pl cut i mai animant Au nv at multe lucruri a timpului liber. despre natur i despre societate. Terapie cu ajutorul Stimularea rela iilor de Colaborarea Centrului animalelor grup; cu Asocia ia Dog for nsu irea de cuno tin e Life din Satu Mare a prin joc cu cinii adus rezultate deosebite dresa i; pe plan rela ionalCorectarea disfunc iilor afectiv; copiii s-au motorii prin antrenarea ata at foarte mult de cei n joc cu cinii dresa i. doi cini autoriza i pentru terapie i n acela i timp au dezvoltat prietenie i spirit de echip . 3. Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului/ programului dvs. ( v rug m s v referi i la criteriile de mai jos ) Domeniu Bun stare emo ional : siguran , mediu stabil, r spuns pozitiv, mbun t iri observate Climatul asigurat n Centru d copiilor siguran , i ncurajeaz spre 126

ncredere n sine, absen a abuzului fizic, emo ional, sexual;

Rela ii interpersonale: rela ii de prietenie, afec iune, intimitate cu familia, colegii, vecinii, prietenii, rela ii sexuale;

comunicare deplin , spre crearea de rela ii armonioase ntre ei precum i n raport cu personalul. Copiii s-au adaptat n timp la cerin ele Centrului, cunosc i respect programul zilnic. P rin ii cunosc programul Centrului i uneori chiar particip activvoluntar n timpul zilei la activit i. Familiile i personalul Centrului motiveaz n mod pozitiv integrarea copilului n colectivitate, participarea lui la activit i i orice progres, ct de mic, ob inut. Prin stimul ri consecvente copiii au nceput s - i dobndeasc ncrederea n sine, fa de familie, fa de personalul Centrului i au dezvoltat rela ii de sincer prietenie i ajutor reciproc fa de colegii lor. Nu s-au nregistrat pn n prezent forme de abuz, descurajndu-se orice tendin e vicioase care ar ataca intimitatea copilului. Programul Centrului prevede lucrul diferen iat cu copiii, dar n aceea i m sur i activit ile de grup ( jocuri, ie iri, dezbateri, terapii de grup ), care au stimulat colegialitatea, spiritul de echip i con tientizarea pozi iei ocupate n cadrul grupului. Copiii s-au ata at unii de al ii i tr iesc starea de bucurie sau de triste e a colegilor; comunicarea empatic este, desigur, la nivelul lor de dezvoltare afectiv . Starea de boal i manifest rile generale ale copiilor din Centru sunt date confiden iale. Majoritatea copiilor au deficien e grave, nici unul dintre ei nefiind independent. Prin urmare nu putem vorbi de control asupra propriei vie i i nici de implicare sexual . n ceea ce prive te sexualitatea copiii sunt n stadiul de 127

informare asupra modific rilor fiziologice ap rute la vrsta lor ia mijloacelor de protec ie. n cadrul Centrului este sus inut conceptul de prietenie prin dezbateri, exemple, iar rezultatele ob inute sunt vizibile: comunicare ntre copii, ajutor reciproc din proprie ini iativ . La integrarea n Centru nu existau interac iuni cu mediul ce era att de nou pentru ei. Dup o perioad mai lung sau mai scurt de acomodare copiii au deprins ncredere n mediul care le devenise familiar i au nceput s rela ioneze cu u urin n acest cadru. Ei au nevoie ntotdeauna de o cunoa tere mai aprofundat a unui mediu sau a unei persoane pentru a se sim i n siguran . Bun stare material : obiecte Copiilor li se asigur un spa iu de proprietate, nevoi materiale ( bani, activitate i de joac adecvat i n locuin , hran , haine, utilit i etc. ), conformitate cu nevoile lor, li se loc de munc , activitate asigur dou mese pe zi, transportul satisf c toare; de la/ la domiciliu, echipamente speciale pentru cei cu handicap locomotor. Ei au obiecte personalizate ( rechizite, obiecte de igien personal ), iar din bugetul Centrului n fiecare an li se cump r mbr c minte i nc l minte. Fiind copii sub 18 ani sunt stimula i pentru a deprinde ndeletniciri care iar ajuta mai trziu n inser ia n munc . De asemenea, celor cu abilit i specifice li s-a ntocmit profilul voca ional. Dezvoltare personal : educa ie i Copiii i-au mbun t it exprimarea, abilitare/ reabilitare, activit i i-au mbog it vocabularul, au planificate, sprijin pentru utilizarea achizi ionat noi cuno tin e. tehnicii moderne ( telefon, PC, lift, Se lucreaz conform planurilor de interfon etc. ); interven ie individualizate, dup posibilit ile i dezvoltarea intelectual a fiec rui copil. Aceste planuri surprind nevoile de via independent ale copiilor. Astfel, ele 128

urm resc: cre terea nivelului intelectual, autonomia personal , dezvoltarea nivelului sociocomportamental, recuperarea sau ntre inerea nivelului psiho- motor, orientare socio- profesional ( unde este posibil ). Copiii cu deficien mintal u oar au nv at s foloseasc telecomanda, calculatorul, aspiratorul, combina muzical , xeroxul, imprimanta. Bun stare fizic : starea s n t ii, Zilnic se efectueaz triajul medical i satisfac ie, hran , activit i cotidiene exist o colaborare foarte bun ntre ( mbr cat, consum hran , toalet , Centru i medicii de familie, ace tia igien personal , deplasare etc. ); r spunznd la orice sesizare privind starea de s n tate a copiilor nscri i n eviden ele lor. Ct prive te domeniul mobilit ii, n Centru se desf oar activit i specifice de recuperare prin kinetoterapie n func ie de dizabilit i, iar n mod permanent personalul acord ajutor copiilor care nu se pot deplasa singuri, nu pot urca sau cobor n/ din ma in etc. Medica ia fiec rui copil dup diagnostic este administrat de c tre familie. Centrul ncearc s asigure starea de bine, ncrederea n via , sentimentul utilit ii prin terapiile desf urate. Majoritatea copiilor cu deficien e grave au nv at s se hr neasc singuri sau cu ajutor minim. Meniul zilnic respect criteriile de vrst i calorii necesare copiilor i sunt luate n considerare preferin ele culinare ale acestora. Colabornd cu familiile copiilor, n cele mai multe cazuri s-au transmis informa ii necesare pentru asigurarea unui stil de via adecvat nevoilor speciale ale copilului att n Centru ct i acas . Autodeterminare: decizii personale, Personalul implicat n activit ile 129

controlul propriei vie i, selectarea alternativei dorite;

Incluziune social : mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social / comunitar ;

zilnice cu copiii cu nevoi speciale stimuleaz exprimarea liber privind alegerile n general de via ale copiilor i n acela i timp prin tact profesional i ndrum spre cele mai potrivite op iuni fie c e vorba de vestimenta ie, alimenta ie sau legare de prietenii. Copiii integra i nu numai c sunt copii cu dizabilit i, dar se afl i la o vrst dificil pentru oricare alt copil. Prin programul urmat copiii au posibilitatea exprim rii libere a opiniilor, p rerilor, ideilor n limita posibilit ilor lor. Nefiind nc majori, unul dintre obiectivele programului este ca pn la 18 ani ace ti copii s aib totu i achizi iile necesare pentru o judecat logic i prin urmare pentru a lua propriile decizii. Copiii nc dependen i, dup ce au reu it s se integreze n colectivitate, au nceput s sugereze prin gesturi sau sunete trebuin ele primare. Ceilal i copii i manifest dorin e personale, aspira ii de viitor, planificate pe timp apropiat sau ndep rtat. n perioadele de evaluare ini ial , pentru observarea comportamentului real al copiilor, ace tia sunt l sa i s fac ce doresc, s - i exprime liber ini iativele, pentru ca apoi aceste ac iuni ale lor, fie c sunt bune, fie c sunt gre ite, s constituie un suport de nv are ( nt rire a faptelor bune, corectare a faptelor gre ite ). Organiznd de mai multe ori Zilele Por ilor Deschise, comunitatea a nceput s cunoasc tot mai mult problemele copiilor cu nevoi speciale, prin pres , radio, televiziune, vizite la Centru. n acela i timp i copiii au acceptat 130

Drepturi: absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor;

aceste ac iuni comunitare, f r a crea probleme de inadaptare n fa a necunoscu ilor. Foarte important a fost ob inerea acordului p rin ilor pentru aceste apari ii ale copiilor n mass- media. La inser ia social a copiilor au contribuit foarte mult colaboratorii Centrului: - Asocia ia Dog for Life- terapie cu ajutorul animalelor, cu care s-au organizat ac iuni att n Centru ct i n exterior ( trand, parc, cinematograf, teatru de p pu i etc. ) - Colegiul Na ional ,, Mihai Eminescu , prin Strategia de Ac iune Comunitar ( acte de voluntariat ale elevilor n incinta sau n afara Centrului ) - Voluntari ( elevi romni, francezi, p rin i ai copiilor ) - Romsilva, care doneaz n fiecare an de Sf. Dumitru pomi n cadrul ac iunii de platare de c tre persoanele cu dizabilit i. Personalul Centrului cunoa te i respect Drepturile Interna ionale ale Copilului, iar beneficiarii au fost informa i asupra acestor drepturi. Sunt estompate agresivit ile verbale sau orice alte tratamente inechitabile adresate copiilor. ntr-un mediu necunoscut este totu i nevoie de prezen a unei persoane familiare care i d copilului sentimente de siguran , protec ie social , anihilnd frica de nou i orice stare de panic ce ar putea avea urm ri imprevizibile.

4. Ct de substan ial este impactul proiectului/ programului? 1. Ct de multe persoane beneficiaz de proiect/ program? 131

Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani

C i beneficiari a i avut pn n prezent? 29; n prezent: 18 i familiile acestora. 17; n prezent: 9 i familiile acestora.

Fete sub 18 ani

Men ionez c programul Centrului este pentru copii ntre 10- 18 ani, iar cei sco i din eviden fie c au mplinit 18 ani, fie c s-au integrat n coala Special , fie c i-au schimbat domiciliul sau nu a existat colaborarea cu familia. Tabelul ce urmeaz va cuprinde date numai despre copiii prezen i, respectiv 27 copii. 2. Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite. Tipul dizabilit ii Num r de adul i cu dizabili tate u oar F Num r de copii cu dizabili tate u oar M 3 F Num r de adul i cu dizabili tate modera t M F Num r Num r Num r de de de copii adul i copii cu cu cu dizabili dizabili dizabili tate tate tate modera sever sever t M F M F M F 2 1 2 7 3

M/F M Retard psihic- 6 copii Encefalopatie infantil sechelar 12 copii Boala Longdon Down- 4 copii Autism- 5 copii

1 4

3 1

3. Ce alte argumente pute i aduce n sprijinul ideii cproiectul dvs. este deosebit de semnificativ/ relevant? Acest proiect este relevant ntruct asigur dezinstitu ionalizarea i revenirea n familie a copiilor din vechile institu ii de protec ie, previne institu ionalizarea i abandonul prin sprijinul dat familiei, implic copiii n activit i adecvate i organizate n func ie de planul de interven ie elaborat de echipa de speciali ti 132

conform nevoilor individuale ale copiilor. Proiectul urm re te n mod special cre terea autonomiei personale i integrarea copiilor n comunitate. 5. Ct de durabil ( sustenabil ) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? - de 2 ani 2. Care este valoarea aproximativ a bugetului dvs. anual? Suma ( aproximativ ): 1.000.000.000 din care: a. bugetul local contribuie cu 61% b. bugetul statului contribuie cu 39% c. sponsorii interni contribuie cu 0% d. donatorii externi contribuie cu 0% 3. Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: Proiectul func ionnd de 2 ani, vom marca fluctua ia din ultimul an: Contribu ia Bugetului local Bugetului statului Sponsorilor interni Donatorilor externi A crescut A sc zut S-a oprit

X X X

( pune i un X n rubrica convenabil !) 4. Ce alte elemente pot dovedi c proiectul este durabil ( sustenabil)?
Familiile beneficiare sunt foarte mul umite de progresele copiilor lor, comunitatea este ncrez toare i con tientizeaz nevoile copiilor cu handicap, echipa de speciali ti a Centrului este consecvent n activit i i lucreaz cu d ruire. Acestea sunt cteva motive pentru care DGPCAS Satu Mare sus ine n continuare programul Centrului ,, Robert

6. De ce este proiectul relevant/ semnificativ? 1. Care au fost cei mai importan i ( maximum 5 ) factori care au contribuit la succesul proiectului? Munca n echip ; Colaborarea cu familia; Colaborarea cu alte institu ii; Plan de interven ie riguros organizat i etapizat; Respect, bun voin , r bdare i n elegere pentru copilul aflat n suferin , dar tratat ca membru cu drepturi egale n societate. 133

2. Ce dificult i ( maximum 3 ) a i ntmpinat i cum a i reu it s le dep i i? Idei preconcepute i dezinteres din partea societ ii- le-am dep it cu ajutorul mass-mediei; Familii obi nuite s - i in copiii doar n cas din cauza deficien ei avute i refractare la nou- am convins aceste familii de menirea Centrului, de beneficiile pe care le aduce att pentru copii ct i pentru ei i de nevoia copiilor, indiferent de cum ar fi, de comunicare cu al i copii i de integrare social ; Probleme de adaptare ale copiilor la noul mediu- problem rezolvat prin participarea activa familiei: p rin ii au informat personalul asupra comportamentului copiilor, felul lor de comunicare, simboluri de exprimare etc; au stat al turi de copiii lor i au luat parte la activit i att ct a fost nevoie ( 5- 10 zile ). 3. Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. Cteva cuvinte cheie pe care le vom urm ri n urm torii doi ani: PRINCIPII, SCOPURI, OBIECTIVE, ECHIP , CREATIVITATE, TRANSPAREN , FIABILITATE, AUTOFORMARE, CONSECVEN , OPTIMISM, EMPATIE, RESPECT, DRAGOSTE, NEDISCRIMINARE, JOC, INFORMAREA COMUNIT II, COLABOR RI, INVESTI II. 4. Ce strategii ve i folosi pentru aceast evolu ie?(men iona i doar 3) Colaborare deplin n cadrul echipei de speciali ti att n evaluarea copiilor ct i n activitatea propriu-zis desf urat la grupe. Urm rirea consecvent , pas cu pas, a planului de interven ie individualizat pentru recuperarea sau reabilitarea organizat a copiilor. Colaborarea cu alte institu ii din ar sau str in tate n interesul superior al copiilor. 5. Care sunt experien ele pe care a i dori s le mp rt i i altora? Plan de interven ie: planurile noastre de interven ie sunt desf urate pe coli mari de carton i expuse la vedere. Aici sunt trecute compartimentele de lucru, obiectivele generale i cele specifice, metodele folosite i activit ile n cadrul c rora se urm re te realizarea obiectivelor planului. Ceea ce se realizeaz este marcat cu marker ro u direct pe plan. Astfel noi vedem tot timpul unde ne afl m i care este pasul urm tor n munca noastr . 134

 Lucrul diferen iat: ntr-o grupde copii cu acela i diagnostic i acela i grad de handicap nici unul nu se comportla fel ca altul. Fiecare se exprim sau nva n felul s u. Astfel, sunt zile n care ergoterapeutul de grup face n acela i timp desen cu un copil, scriere cu altul, gherghef cu al treilea, comunicare cu al patrulea etc. Terapia cu animalele: are rezultate deosebite pe plan rela ional- afectiv. Oricine are posibilitate poate s o aplice i va fi un succes garantat. 6. Pute i g si vreun alt motiv pentru care proiectul dvs. sfie selectat pentru acest studiu ( interesant, inovativ, creativ, model aplicabil etc. )? Recompensarea muncii copiilor: copiii au realizat lucr ri interesante pentru expozi ia intitulat ,, Taina minilor mele , iar dona iile primite de la persoane fizice sau organiza ii participante a fost recompensa lor: o excursie, de dou zile la Tarna Mare. Planurile de interven ie i dosarele copiilor sunt crea ia proprie a echipei de speciali ti ai Centrului. Planul de interven ie a fost prezentat anterior, iar dosarul fiec rui copil este organizat pe cinci compartimente: documenta ie de identificare, evalu rile echipei, plan de interven ie n form restrns , antecedente ( documente ale copilului considerate vechi dar care folosesc ca surs de compara ie n evalu rile finale ), lucr ri personale. Terapia cu animalele a fost o noutate att pentru institu ie ct i pentru comunitate. n cazul select rii acestui proiect, terapia cu animalele va fi prima prezentat ca succes al Centrului de ngrijire i de Recuperare de Zi ,, Robert - Satu Mare. Numele persoanei care a completat chestionarul : APAN ANA Pozi ia n cadrul proiectului/ programului: ef Centru Data: 29.10.2004 Semn tura: tampila:

135

CHESTIONAR 1. Detalii despre Institu ie / Proiect Asocia ia Phoenix Speran a Media , str. G. Toprceanu 14, cod 551028, jud Sibiu Maria St nescu, pre edinte executiv 0269-842162 speranta@birotec.ro

Nume: Adres :

Persoan de contact: Telefon / fax: Email:

Tip de agen ie(institu ie, ONG, etc.): ONG Data nfiin rii: 27.06.2001 Numele directorului de proiect: C plnean Florin Finan atori: 14.Empatec NV din Sneek, Olanda 15.ANPH 16.Donatori locali 7. Informa ii generale despre proiect:

22.Care sunt obiectivele generale ale proiectului? Integrarea socio-profesional a tinerilor cu dizabilit i ap i de munc 6. Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere, etc.) Rezultate ob inute Peste 20 de tineri au c p tat deprinderi suficiente pentru a realiza activit i productive 7 tineri au integra i ntr-un

Activitatea Training profesional

Obiective specifice Deprinderea abilit ilor de baz ntr-o meserie Integrarea ntr-un loc de munc pl tit 136

Consiliere pentru munc

Formarea abilit ilor sociale asociate muncii Con tientizarea avantajelor i constrngerilor asociate unui loc de munc

Suport material

Facilitarea accesului la resurse

loc de munc Cca 25 de tineri i-au modificat percep ia i atitudinea fa de un loc de munc (nu mai cred ca li se cuvine totul i n eleg c trebuie s lupte pt a ob ine ceva) Cca 15 tineri au nv at ei n i i s i caute un loc de munc To i beneficiarii au avut asigurate condi iile materiale astfel nct s-au putut focaliza pe deprinderea meseriei

7.

Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m svreferi i la criteriile de mai jos) mbun t iri observate O mai mare ncredere in sine ca urmare a deprinderii unei meserii, s-a realizat un mediu securizat emo ional pe perioada activit ilor

Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic, emo ional, sexual; Rela ii interpersonale: Rela ii de prietenie, afec iune, intimitate, cu familia, colegii, vecinii, prietenii, rela ii sexuale; Bun stare material : Obiecte, proprietate, nevoi materiale (bani, locuin , hran , haine, utilit i, etc.), loc de munc , activitate satisf c toare; Dezvoltare personal : Educa ie i abilitare/reabilitare, activit i planificate, sprijin pentru utilizarea tehnicii moderne (telefon, PC, lift, interfon, etc.); Bun stare fizic : Starea s n t ii, satisfac ie, hran ,

Au stabilit numeroase contacte interpersonale. Socializarea a fost unul din cele mai mari c tiguri ob inute de beneficiari. S-au stabilit chiar rela ii de afec iune pentru doi beneficiari Beneficiarii servesc dou mese pe zi, primesc pachete de s rb tori n cadrul a dou campanii anuale i beneficiaz de transport gratuit sau cu pre redus acolo unde este cazul. n plus, pentru cei care realizeaz activit i productive primesc produse Au primit instruire n meseriile de croitor, tmplar, operator PC, leg tor c r i. Trei beneficiari au nv at activit i de secretariat i tehnoredactare. Prin cabinetele medicale (medicin general i stomatologie) s-a mbun t it satrea de s n tate a 50 % 137

activit i cotidiene (mbr cat, consum hran , toalet , igien personal , deplasare, etc.); Autodeterminare : Decizii personale, controlul propriei vie i, selectarea alternativei dorite; Incluziune social : Mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social /comunitar ; Drepturi: Absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor; 4.

din beneficiari. De asemenea derul m un program de monitorizare a tratamentelor beneficiarilor. Beneficiarii pot opta pentru tipul de instruire dorit, meniu, transport, activit i recreative. De asemenea sunt sprijini i n luarea unor decizii personale. Beneficiarii sunt implica i n campanii de mediatizare, dau declara ii n pres sau in discursuri publice la diferite evenimente. Prin statut i regulament, nu se fac nici un fel de discrimin ri. n centrul de training nva mpreun etnici romni, romi, maghiari, germani, tineri cu hiv i orice alte forme de handicap.

Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program? Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani C i beneficiari a i avut pn n prezent? 12 17 4 5

23.Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite.

138

Num r de Tipul adul i cu dizabilit dizabilitate ii u oar

M/F

Num r de copii cu dizabilitate u oar

Num r de adul i cu dizabilitate moderat

Num r de copii cu dizabilitate moderat

Num r de adul i cu dizabilitate sever

Num r de copii cu dizabilitate sever

M
1 -

F
-

M
-

F
-

M
2 2 -

F
4 3 1

M
-

F
1 -

M
2 2

F
2 4

M
-

F
1

Intelectua l Epilepsie Asociat Epilepsieintelectual Sindrom Down Hidrocefalie Motorie Motorie

1 -

2 -

2 2

3. Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant? Acest proiect este deosebit de relevant pentru comunitatea local i ar trebui replicat urgent n ct mai multe loca ii posibile deoarece aduce o alternativ viabil pentru o categorie important de persoane car pot, doresc i trebuie s fie active. n plus, beneficiarii sunt sprijini i s se integreze n munc (exist deja beneficiari angaja i afla i n monitorizare) 5. Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? De 2 ani 11.Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): _______700.000.000 lei___ din care: a. Bugetul local contribuie cu ____0____ (%) __0___ b. Bugetul statului contribuie cu ___195.000.000 lei ___ (%) __30__ c. Sponsorii interni contribuie cu___32.500.000____ (%) __5___ d. Donatorii externi contribuie cu __422.500.000___ (%) __65___ 12.Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: 139

Contribu ia A crescut Bugetului local Bugetului statului Sponsorilor x interni Donatorilor x externi (pune i un x n rubrica convenabil !)

A sc zut x

S-a oprit

13.Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)? Pentru continuarea proiectului s-au realizat parteneriate cu SPAS Sibiu i Comisia de expertiz jude ean care orienteaz n mod automat noii beneficiari Experien a acumulat n acest proiect dar i n altele similare va fi continuat ntr-un centru de resurse care promoveaz dreptul la munc pl tit al persoanelor cu dizabilit i 6. De ce este proiectul relevant/semnificativ? 1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a. Grupul int a fost bine identificat. Nevoia n comunitate este real iar serviciile oferite r spund n mare m sur acesteia. b. Sprijinul material i mai ales cel concretizat n instruiri din partea partenerului nostru olandez, compania EMPATEC din Sneek, Olanda c. Implicarea permanent a personalului, construirea unei echipe de speciali ti afla i n continu formare d.nfiin area unei re ele de replicare a proiectului care func ioneaz n 5 ora e din ar e. Derularea n paralel a altor proiecte care r spund nevoilor persoanelor cu dizabilit i (cabinete de recuperare, activit i de timp liber, grupuri de suport pentru familii, etc.) 2. Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i? a. Reticen ele angajatorilor privitor la aceste persoane. Am cerut pentru nceput s i primeasc n practic . Ulterior s-au convins c nu au dect de c tigat daca i-ar angaja. b.Refuzul familiei de a- i scoate copilul n lume. E i a a b tut de Dumnezeu, s -l mai pun i la munc ? se ntrebau unele mame supraprotectoare care- i 140

sufocau propriul copil sau dimpotriv , totala desconsiderare a familiei L sa i-l c nu poate sfacnimic!. A fost nevoie de timp i de consiliere pentru familie asociate cu obiectivarea tuturor rezultatelor pns-a mi cat ceva n percep ia lor. c.Atitudinea autorit ilor publice care nu n eleg ceste sarcina lor s sus in asemenea proiecte. S-a produs o u oarmbun t ire n urma numeroaselor expozi ii, oferte, etc. realizate de asocia ie. 24.Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. n viitor proiectul se va extinde nfiin nd noi ateliere, va elabora un manual complet de proceduri utilizabil de alte ONG i va crea o re ea de angajtori. 25.Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3) a.Elaborarea de noi matweriale informative i derularea de campanii de mediatizare n rndul angajatorilor locali. b.Parteneriatul cu institu ii cheie (SPAS, AJOFM) i derularea de activit i mpreun cu acestea (Bursa locurilor de munc , sesiuni de formare, campanii publice) c. Implicarea mai activ a familiei ca poten ial resurs n formarea i integrarea profesional 26.Care sunt experien ele pe care a i dori s le mp rt i i altora? a. De cele mai multe ori nu se pot ob ine rezultate foarte multe i foarte repede. Beneficiarii trebuie angrena i n pa i m run i care trebuie repeta i i consolida i. Pentru angajare e util s se nceap de exemplu cu 2 ore/s pt mn la sediul angajatorului ca practic sau contract de munc par ial. Ulterior, se poate stabili un contract pe o perioad mai mare. b. Nu este nevoie n deprinderea unei meserii ca beneficiarul snve e toate elementele meseriei. Cel mai eficient este sidentific m n avans un loc de munc i s preg tim persoana pentru respectivul loc de munc . n acest fel este mai bine preg tit i resursele sunt exploatate mai eficient. n cazul reorient rii, se poate intervenii din nou pentru perioade scurte cu o nou formare. c.Investi iile n personal sunt mai profitabile decat investi iile n echipamente. O echip bun va atrage n mod sigur investi ii n echipamente dar un echipament bun nu va aduce ntotdeauna specialistul c utat. 141

27.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a. este perfect aplicabil n orice comunitate (cu unele modific ri) astfel nct s fie pus n ac iune cu costuri ini iale mai mari dar cu costuri de intre inere relativ mici fa de alte proiecte. b. Poate contribui (e drept c nu n foarte mare m sur ) la autofinan area sa (a atelierelor care realizeaz produc ie) cu efect benefic pentru toate celelalte proiecte. c.R spunde din plin cerin elor integr rii europene. n plus, este primul pas c tre via activ a persoanelor cu handicap, a a cum este firesc s fie.

Numele persoanei care a completat chestionarul: Florin C plnean Pozi ia n cadrul proiectului / programului: Coordonator

Data: 10.12.2004 Semn tura: --------------------------- tampila

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CHESTIONAR
1. Detalii despre Institu ie / Proiect
ASOCIA IA ESPERANDO Baia Mare, str. George Co buc 6/6, cod 430284 ANDRADA CR CIUN Tel.:0262-206084, Fax: 0262-206085 esperando@rdslink.ro

Nume: Adres : Persoan de contact: Telefon / fax: Email:

Tip de agen ie(institu ie, ONG, etc.): ONG Data nfiin rii: 5 FEBRUARIE 2001 Numele directorului de proiect: DANIEL FILIPA Finan atori: 17.USAID 18.ANPH 19.BUGETUL DE STAT (lg. 34/1998) 20.PRIM RIA BAIA MARE

8.
28.

Informa ii generale despre proiect:

Care sunt obiectivele generale ale proiectului? a. Recuperarea neuro-motorie a copiiilor i tinerilor cu dizabilit i; b. Integrarea lor n colectivitate i n societate; c. sprijinirea familiilor lor.

8.

Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, 143

locuri de munc protejate, activit i de grup, consiliere, etc.)

Activitatea Educatie

Obiective specifice - s dobndeasc , n func ie de deficien a pe care o au abilit i de comunicare, rela ionare, abilit i de scris-citit, etc. - mbun t irea capacit ii de autoservire. - toate acestea contribuie la cre terea gradului de autonomie personal . - cre terea gradului de integrare social ; - cre terea gradului de autonomie social ; - crearea unor oportunit i de acceptare la nivel social a copiilor i tinerilor cu dizabilit i.

Rezultate ob inute - formarea deprinderilor de scriere corect ; - efectuarea opera iilor matematice de gradul I i II; - coloratul n contur; - alfabetizarea pre colarilor, iar pentru cazurile severe stabilirea unei minime rela ii de comunicare.

Socializarea

- s-au realizat diferite activit i cu caracter socializator: - vizit la Gr dina Botanic - vizit la planetariu - ie iri la iarb verde mpreun cu elevii de la o gr dini cu program normal - ie iri la circ (unii copii participnd pentru prima dat la circ) - unii dintre copiii pre colari au fost nso i i la Biblioteca Jude ean , n vederea cultiv rii gustului pentru lectur - p rin ii continu programul de recuperare de la Centru i acas ; - p rin ii au n eles c solu ia nu este marginalizarea acestor copii

Consiliere

- cre terea interesului i implic riii familiilor n recuperarea copiilor lor; - reducerea riscurilor abandonului acestor copii prin oferirea de sprijin 144

familiilor.

i sunt interesa i s participe la ct mai multe activit i cu caracter social; - au fost organizate, consilieri individuale la cabitenul psihologului; - grupuri suport i-au ajutat pe p rin i s dep easc n mare m sur problemele legate de cre terea i educarea copiilor, au realizat schimburi de experien , au g sit noi solu ii i noi resurse pentru a dep i situa iile mai dificile.

Advocacy

9.

- s-au organizat cursuri pentru p rin i, ocazie cu care le-au fost explicate drepturile i ndatoririrle pe care le au ca asisten i personali; - au aflat unde trebuie s se adreseze n cazul n care au o problem legat de nerespectarea acestor drepturi. Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m svreferi i la criteriile de mai jos) mbun t iri observate - activitatea de kinetoterapie, pe lng rolul de recuperare, a condus la mbun t irea tonusului psihic, la dezvoltarea voin ei i a ncrederii n for ele proprii; - au loc ntlniri i discu ii ntre p rin i i speciali tii Centrului n leg tur cu problemele cu care se confrunt copiii, progresele pe care le fac; - n Centru se desf oar zilnic, dup un program bine stabilit de psiholog, activit ile de recuperare. Coeren a acestei activit i este dat de faptul c munca speciali tilor din Centru este continuat acas , de c tre 145

- sprijin n rezolvarea unor probleme n ce prive te rela ia cu institu iile statului i probleme legate de ngrijirea copilului; - informarea cu privire la nout ile legislative ap rute.

Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic, emo ional, sexual;

Rela ii interpersonale: Rela ii de prietenie, afec iune, intimitate, cu familia, colegii, vecinii, prietenii, rela ii sexuale;

Bun stare material : Obiecte, proprietate, nevoi materiale (bani, locuin , hran , haine, utilit i, etc.), loc de munc , activitate satisf c toare;

p rin i. n acest sens asistentul social mediaz rela ia dintre copil-specialist-p rin i. - progresele copiilor se datoreaz i faptului c sunt stimula i pozitiv de c tre to i cei care i au n ngrijire; - atitudinea personalului i a familiei nu este una de comp timire, care ar duce la diminuarea ncrederii n for ele proprii, ci una de ncurajare, n elegere i sprijin; - copiii care se pot deplasa mai bine ajut , al turi de personal, pe cei mici s ndeplineasc unele activit i desf urate; - prin manifest rile artistice realizate, se simt mai aproape de ceilal i copii i tineri din comunitate. - n cadrul Centrului de Recuperare s-a format un grup de prieteni; - pe lng activit ile pe care le desf oar mpreun n Centru ei continu rela ia i n timpul liber: unii copii se viziteaz acas i comunic prin telefon; - se constat o mbun t ire a rela iei copil-p rinte printr-o mai mare implicarea n dezvoltarea i progresul copiilor; - copiii asista i la domiciliu i care au fost ncadra i n nv mntul de mas au reu it diversificarea cercului de prieteni; - au reu it s fie mai deschi i fa de cei din jur i s i exprime dorin ele, nevoile i chiar problemele; - au nv at care este diferen a ntre un secret i un lucru pe care l pot mp rt i prietenilor i colegilor. La unii tineri, aceasta a dus la mbun t irea capacit ii de decizie. - tinerii din Centru au fost ajuta i s tie s cumpere singuri unele produse pe care ei i le doresc, s pl teasc i s a tepte restul; - de curnd, a fost introdus o nou activitate, cea de orientare profesional . Aceast activitate este menit s identifice posibile profesiuni ndr gite de tn r i s le dezvolte. - periodic, Asocia ia Esperando organizeaz spectacole, unde copiii cnt , recit poezii i pentru aceste eforturi depuse ei sunt aplauda i i aprecia i de persoanele prezente; - de curnd, copiii din Centru au participat la Olimpiada Special organizat de Funda ia HHC. 146

Dezvoltare personal : Educa ie i abilitare/reabilitare, activit i planificate, sprijin pentru utilizarea tehnicii moderne (telefon, PC, lift, interfon, etc.);

Bun stare fizic : Starea s n t ii, satisfac ie, hran , activit i cotidiene (mbr cat, consum hran , toalet , igien personal , deplasare, etc.);

Autodeterminare : Decizii personale, controlul propriei vie i, selectarea alternativei dorite;

Incluziune social : Mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social /comunitar ;

Partcipnd la mai multe probe copii au ob inut fiecare medalii i diplome. Ei suntfoarte mnndri de realiz rile i reu itele lor; - aceste activit i le-au nt rit sentimentul utilit ii sociale; - ei au nv at s se bucure, s zmbeasc i s tr iasc din plin aceste momente; - ajuta i de speciali tii Centrului uniii au putut nv a s foloseasc calculatorul (minime cuno tin e de utilizare, conform dizabilit ii), telefonul i telecomanda; - una dintre beneficiare cnt foarte melodios solovoce i a avut posibilitea s i perfec ioneze calit ile vocale al turi de meloterapeutul Centrului. - n func ie de dizabilitate s-au nregistrat mbun t iri legate de igien personal i autongrijire; - unii copii reu esc, acum, s se spele singuri pe din i, s foloseasc toaleta, s i aleag hainele n func ie de sezon, s m nnce singuri, s se ngrijeasc ; - o tn r din Centru a reu it s - i dezvolte motiva ia intrinsec n ce prive te respectarea unui regim alimentar. Fiind u or supraponderal , ea urmeaz cu stricte e regimul i efectueaz zilnic exerci iile fizice necesare. - prin specificul serviciilor oferite, urm rim dezvoltarea autonomiei personale. De exemplu, dac la nceput, Dana nu reu ea s se deplaseze singur , n prezent ea face plimb ri lungi. - n discu iile despre evenimentele cotidiene purtate n Centru, tineriii au posibilitatea s i manifeste opinia n mod liber i s ajung la anumite concluzii; - ncuraj m beneficiarii s aleag unele activit i care ar putea fi desf urate n Centru sau cu ocazia unor manifest ri; - cei mici sunt l sa i s i aleag juc riile care le plac; aceasta putea contribuie la dezvoltarea capacit ii de nv are; - n prezent, copiii care frecventeaz Centrul de Recuperare Esperando sunt foarte sociabili datorit deselor ie iri n comunitate; - Asocia ia a realizat o serie de mediatiz ri cu privire la problemele cu care se confrunt copii cu dizabilit i i familiile lor; acestea au vizat stimularea cre terii particip rii publice n rezolvarea problemelor acestor 147

Drepturi: Absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor;

copii; - am demonstrat lumii c ace ti copii i tineri sunt membrii ai comunit ii sociale, c pot face ceva, c au o mare capacitate afectiv i c pot fi utili comunit ii; - au fost realizate activit i de tip respiro, ie iri la cofet rii, la spectacole i activit i n comun cu copii de la gr dini e i licee cu program normal; - n cadrul unei activit i de socializare i abilitare manualorganizat mpreun cu copiii de la o gr dini din ora i intitulat Dou mini dibace, ce pot face? au fost realizate decora iuni pentru pomul de Cr ciun; - aceste activit i au fost menite s creeze o mai bun rela ionare ntre copii i tinerii din comunitate, cadrelor didactice i copiii cu dizabilit i. - p rin ii au n eles c fiecare copil, n pofida deficien ei pe care o are, dispune i de anumite calit i specifice; - prin desele ie iri n comunitate i ajut m s se obi nuiasc cu locuri noi, cu situa ii noi; - speciali tii cultiv o atitudine pozitiv fa de boala pe care o au; - astfel ace tia pot spune: Noi nu suntem ciuda i, ci doar diferi i.

4.

Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program? Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani C i beneficiari a i avut pn n prezent? 4 3 20 30

29.Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite.

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Tipul dizabilit ii

Num r de adul i cu dizabilitate u oar

Num r de copii cu dizabilitate u oar

Num r de adul i cu dizabilitate moderat

Num r de copii cu dizabilitate moderat

Num r de adul i cu dizabilitate sever

Num r de copii cu dizabilitate sever

M/F

M
4 1 1

F
5 3 1 2 1

Tetrapareza spastica Sindom Down Displegie spastica Hemiparez Amiotrofie spinal Atrofie nerv optic Retard neuromotor Tetralogie fallot Meningocel cu hidrocefalie Spuna bifida.Mielodisplaz ie Epilepsie Oligofrenie i encefalopatie Tetraparez flasc

2 1 3 1

1 1

1 1 1 1

3. Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant? n primul rnd, este primul serviciu relativ complet oferit la nivelul jude ului Maramure . Pn acum au fost oferite servicii limitate: fie gr dini , fie psihoterapie, fie integrare. Nici un Centru nu a oferit ns asemenea servicii (recuperare fizica, psihoterapie, logopedie, educa ie, recreere, integrare etc.). Apoi, este vorba despre calitatea deosebit a serviciilor, dat att de dot rile realizate, ct i de preg tirea i experien a (ca i de num rul) personalului Centrului. Un lucru pozitiv, i care aduce multe aspecte pozitive n activitatea Centrului, este faptul c Asocia ia este fondat i condus de c tre p rin ii unor copii cu dizabilit i, i ace tia tiu cel mai bine nevoile copiilor lor, dar sunt i cei mai interesa i ca activitatea Centrului s se desf oare la parametrii cei mai nal i posibili. Rela ia cu presa i cu societatea civil , cu organiza iile neguvernamentale i cu institu iile publice sunt, credem noi, un exemplu excelent de colaborare la nivel local i regional, care, dac ar fi extins i urmat la scar mai mare, ar aduce beneficii greu de imaginat societ ii romne ti. De asemenea, a a cum men ionam, 149

imaginea sectorului non-profit , a organiza iilor neguvernamentale a avut de c tigat enorm prin tot ceea ce Asocia ia Esperando i Centrul de Recuperare au f cut. Tot mai mul i p rin i apeleaz la serviciile Centrului i opteaz pentu scoaterea din izolare a copiilor lor, pentru recuperarea i integrarea lor. Aceasta demonstreaz c inten ia Asocia iei, de a modifica nu doar felul n care societatea prive te copilul cu dizabilit i, ci i felul n care familiile acestora privesc locul i rolul copiilor lor n societate, a fost realist , i c eforturile sale au adus roade i din acest punct de vedere. 5. Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? Proiectul Asocia ieie Esperando func ion eaz de 3 ani. 14.Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): 800,000,000 lei din care: a. Bugetul local contribuie cu 10 (%) b. Bugetul statului contribuie cu 10 (%) c. Sponsorii interni contribuie cu 80 (%) d. Donatorii externi contribuie cu _______ (%) _____ 15.Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: Contribu ia A crescut Bugetului local x Bugetului statului Sponsorilor x interni Donatorilor externi (pune i un x n rubrica convenabil !) A sc zut S-a oprit

16.Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)?

Parteneriatele pe care le-am realizat pn acum, i i-au demonstrat viabilitatea, ne ofer o oarecare siguran privind sus inerea activit ilor Asocia iei Esperando pe termen mediu i lung. Mai exist i alte parteneriate pe care le-am ini iat i care vor aduce un plus n acest sens, iar cele existente urmeaz , oricum, s fie extinse i dezvoltate.

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O alt surs va fi concesionarea serviciilor, care se preg te te deja de mai mult vreme de c tre Guvern. Datorit pozi iei i experien ei acumulate, Asocia ia noastrnu ar trebui s ntmpine, n mod normal, probleme legate de licen iere i concesionarea serviciilor. Chiar i noul serviciu nfiin at de c tre Asocia ie, Centrul de Terapie Ocupa ionaldin Botiza, va putea ajunge, n scurt timp, un sus in tor al activit ilor Asocia iei. Produsele de artizanat care vor fi realizate de c tre persoanele cu dizabilit i din zonvor fi vndute, n primul rnd turi tilor str ini, dar i n ar . Deja o firm de distribu ie s-a ar tat interesat de desfacerea acestor produse prin re eau sa na ional . Este foarte probabil ca i alte activit i aduc toare de venit s devin opera ionale n viitorul apropiat. O alt surs pe care ne baz m este contribu ia cet eneasc , att prin dona ii directe n urne, ct i prin contribu ia din venitul global, respectiv faimosul, deja, 1 %. De asemenea, ne baz m pe cre terea veniturilor ob inute din partea sponsorilor.

6.

De ce este proiectul relevant/semnificativ?

1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a . experian a personalului care lucreaz zi de zi cu copiii i continua lui informare i specializare b. sursele de finan are, care au permis dezvoltarea Centrului de Recuperare prin achizi ionarea de noi aparate pentru o recuperare ct mai eficient . c . parteneriatele, prin care am reu it realizarea schimburilor de experien i mutarea Centrului n ora . d. reac ia pozitiv a beneficiarilor e . echipa care lucreaz cu i pentru binele i progresul copiilor i a tinerilor cu dizabilit i. 2. Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i? a . existen a unor perioade f r surse de finan are. Am reu it s dep im aceast perioad prin c utarea unor persoane sau institu ii care s sponsorizeze activitatea Asocia iei pe un termen mai lung. Am participat la cursuri despre scrierea proiectelor de finan are, n urma c rora am reu it scrierea cu succes a ctorva proiecte. b. lipsa unor surse de finan are stabile, sigure i pe termen lung. n acest sens ncerc m s realiz m un parteneriat pe termen nelimitat cu Prim ria Baia Mare i cu Consiliul Jude ean. c . lipsa legisla iei care s permit finan area ONG de c tre stat n condi ii optime.

30.Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. 151

n primul rnd ne dorim cre terea numarului de beneficiari avnd n vedere faptul c solicit rile sunt tot mai mari, realizarea unei sustineri financiara pe termen luna i obtinerea de parteneriate locale si externe. 31. Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3) a . Crearea servicilor de cea mai buna calitate prin: obtinerea unui spatiu propriu in oras, dotare completa, crearea de noi servicii, la standarde. b. Sa identificam surse de autofinantare -fond-raising. In acest scop dorim informarea populatiei vis-a-vis de posibilitatea sponsorizarii, activitati generatoare de profit, obtinerea unui parteneriat cu autoritatile locale. c . . Dezvoltarea imaginii prin schimburi de experienta, posibilitatea obtinerii finantarii UE, mediatizarea problemelor copiiilor. 32.Care sunt experien ele pe care a i dori s le mp rt i i altora? a. managementul organiza ional b. activit ile i terapiile de recuperare desf urate n Centru c. metodele de mediatizare 33.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a . derularea cu succes primei campanii de strngere de fonduri din

ora , care a adus Asocia iei aproape 100.000.000 lei n 11 luni. Dincolo de bani, a contat la fel de mult imaginea cl ditde Asocia ie i apropierea publicului de copii cu dizabilit i i problemele lor;
b . introducerea de noi proceduri de recuperare prin fizioterapie,

terapie cu flash card-uri i terapie educa ionalprin ini ierea in utilizarea calculatorului i nu numai, masaj, activit i de educa ie i colarizare; ini ierea de activit i noi n cadrul c rora copiii beneficiaz de art-terapie i meloterapie, activit i de recreere combinat cu activit i de recuperare prin sport ;
c . cre terea num rului de parteneriate i faptul cacestea trec dincolo

de o hrtie semnat i devin func ionale i utile. Astfel, ca rezultat al acestor parteneriate, am mutat activit ile Asocia iei ntr-un Centru al Direc iei Generale Jude ene pentru Protec ia Drepturilor Copilului Maramure ; am ob inut o sum de
152

20.000.000 lei lunar de la Prim ria Baia Mare pentru sus inerea activit ilor Centrului de Recuperare; am vizitat un centru pentru copii, adul i i b trni cu dizabilit i din Germania la invita ia i cu sprijinul direct al partenerului nostru german; am deschis un Centru de Terapie Ocupa ionalla Botiza; am ob inut sprijin material n repetate rnduri de la Caritas Satu Mare, filiala Baia Mare; am avut numeroase activit i comune cu copii de la o gr dini i un liceu din ora .
d. ca recunoa tere a notoriet ii i seriozit ii Asocia iei Esperando,

aceasta a fost invitat ca reprezentant a organiza iilor neguvernamentale din Maramure n Comisia Jude ean pentru Protec ia Copilului i n Comisia de Mediere Social . De asemenea, pre edintele Andrada CR CIUN a fost aleasn Consiliul de Conducere al federa iei INCLUZIUNE.

Numele persoanei care a completat chestionarul: DANIEL FILIPA Pozi ia n cadrul proiectului / programului: DIRECTOR EXECUTIV

Data: 30.11.2004 Semn tura: DANIEL FILIPA tampila

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CHESTIONAR 1. Detalii despre Institu ie / Proiect Funda ia de Abilitare Speran a Timi oara, str. Fagului nr.17 psih. LETI IA BABA, director +40-256-49.50.05 bletitia@pcnet.ro ONG

Nume: Adres :

Persoan de contact: Telefon / fax: Email:

Tip de agen ie (institu ie, ONG, etc.): Data nfiin rii: februarie 1993

Numele directorului de proiect: psih. LETI IA BABA Finan atori: 1. The Central European Mental Disability Advocacy Project & Macomb Oakland Regional Center 2. Funda ia pentru o Societate Deschis Romnia 9. Informa ii generale despre proiect:

34.Care sunt obiectivele generale ale proiectului? s schimb m mentalitatea i atitudinea opiniei publice fa de copiii cu dizabilit i intelectuale s integr m copiii cu dizabilit i intelectuale n coli i gr dini e de mas s oferim servicii de sprijin pentru ace ti copii s inform m i consiliem personalul didactic din unit ile integratoare s cre m un model de integrare i pentru alte coli i gr dini e de mas s cre m un centru de resurse pentru gr dini e i coli 10. Descrie i pe scurt principalele activit i ale proiectului (ex. oferire servicii, abilitare, reabilitare, educa ie, advocacy, locuri de munc protejate, activit i de grup, consiliere, etc.)

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Activitatea Contactarea directorilor unit ilor integratoare de c tre coordonatorul de proiect i psiholog pentru a primi acordul de colaborare. Discu ii prealabile cu profesorii de sprijin, responsabilii comisiilor metodice, cadrele didactice colaboratoare, reprezentan i ai ISJ Timi , p rin ii copiilor beneficiari, pentru a primi informa ii despre proiect. ntlniri regulate cu factorii de decizie i cei implica i n derularea propriu-zis a proiectului. Asigurarea transportului la i de la gr dini / coal / Centrul Speran a pentru copii cu deficien e fizice asociate. nregistrarea atitudinii cadrelor didactice i a p rin ilor colegilor copiilor integra i i chiar a p rin ilor acestor copii sa f cut cu ajutorul unor seturi de chestionare. Sesiuni de advocacy pentru integrare n nv mntul de mas a copiilor cu disabilit i intelectuale i pentru revizuirea gndirii i practicii pedagogice raportat la copilul cu disabilit i intelectuale. Consilierea i informarea cadrelor didactic i a p rin ilor privind ideile preconcepute i mentalitatea eronat asupra nevoilor acestor copii, a poten ialului lor, cu scopul de a schimba percep ia, gndirea, atitudinea acestora. Sus inerea unei campanii n

Obiective specifice

Rezultate ob inute s integr m copiii cu Integrarea cu dizabilit i intelectuale n succes a coli i gr dini e de mas beneficiarilor proiectului, n propor ie de 95% n 22 de coli i gr dini e din Timi oara.

s schimb m mentalitatea i atitudinea opiniei publice fa de copiii cu dizabilit i intelectuale

Schimbarea mentalit ii i atitudinii fa de copilul cu disabilit i s inform m i s consiliem intelectuale. personalul didactic din Asigurarea unui unit ile integratoare suport eficient informa ional i profesional pentru cadrele didactice din unit ile integratoare. Cre terea competen elor profesionale ale cadrelor didactice i speciali tilor prin organizarea sesiunilor de preg tire i informare. 155

mass-media pentru mediatizarea debutului, derul rii i succesului acestui proiect. Organizarea unor cursuri de formare i preg tire a cadrelor didactice i profesioni tilor care lucreaz n proiect: Educa ia incluziv , educa ia pentru to i Organizarea unor simpozioane i seminarii pentru informare i diseminare a rezultatelor proiectului: conferin a cu tema Drepturile omului pentru persoanele cu disabilit io strategie na ional pentru Romnia Regulile Standard ONU, o cale de urmat Publicarea a 4 numere din bro ura Educa ia Incluziv , distribuit gratuit n cte 1000 exemplare. Asigurarea accesului celor implica i la informa ie din domeniu: bro uri, suporturi de curs, diferite publica ii de specialitate i materiale informative din biblioteca Funda iei. Evaluarea multidisciplinar a s oferim servicii de sprijin copiilor pentru stabilitea setului pentru ace ti copii de nevoi educa ionale i sociale. Derularea de activit i de stimulare, recuperare i sprijin n cadrul Centrului de Educa ie Special Speran a. Derularea de activit i de suport academic i adaptare curricular cu ajutorul profesorilor de sprijin, n colile i gr dini ele integratoare. Implicarea p rin ilor n activit ile de sprijin, recuperare i reabilitare, n calitate de coterapeu i. 156 Cre terea calit ii vie ii copiilor cu disabilit i intelectuale i familiilor lor, prin cre terea gradului de integrare i acceptan social i colar n cadrul unor servicii de sprijin specializate.

L rgirea echipei de lucru prin implicarea n activit ile de sprijin a studen ilor de la facult ile de profil (psihologie, psihopedagogie special , pedagogie, asisten social ), n cadrul practicii de specialitate sau a activit ilor de voluntariat. Extinderea colabor rilor cu ONG-uri din Timi oara, Agen ia Na ional pentru Persoane cu Handicap, Centrele de Plasament 1 i 2 din Timi oara, Serviciul Autoritate Tutelar Prim ria Timi oara, Serviciul Asisten social Prim ria Timi oara, Direc ia General pentru Protec ia Copilului Timi .

s cre m un model de integrare i pentru alte coli i gr dini e de mas s cre m un centru de resurse pentru gr dini e i coli

Realizarea unui model de integrare pe parcursul anilor de activitate, preluat cu succes de alte unit i colare. Replicarea modelului prin diseminarea informa iei. Constituirea unui centru de resurse informa ionale i umane pentru colile i gr dini ele de mas din Timi oara i din ar (experien teoretic i practic , knowhow, profesioni ti cu competen e n domeniu, informa ii, popula ie colar i pre colar preg tit pentru integrare n nv mntul de mas etc.).

11.

Descrie i pe larg principalele mbun t iri ale calit ii vie ii beneficiarilor cu DI ai proiectului / programului dvs. (v rug m s v referi i la criteriile de mai jos) mbun t iri observate Cre terea stimei de sine i mbun t irea imaginii de sine, a autonomiei personale i a ini iativei. Formarea sentimentului de apartenen la grup (clasa de elevi, coala). 157

Domeniu Bun stare emo ional : Siguran , mediu stabil, r spuns pozitiv, ncredere n sine, absen a abuzului fizic,

emo ional, sexual; Rela ii interpersonale: Rela ii de prietenie, afec iune, intimitate, cu familia, colegii, vecinii, prietenii, rela ii sexuale;

Acceptarea copilului de c tre colegi i cadre didactice, ncurajarea i sprijinirea tuturor activita ilor colare i extra colare ale copilului. mbun t irea rela iilor intrafamiliale prin implicarea mai activ a p rin ilor n activit ile copilului i prin schimbarea atitudinii i mentalit ii p rin ilor fa de propriul copil. Bun stare material : Obiecte, Consilierea familiei n vederea asigur rii, n limita proprietate, nevoi materiale posibilit ilor, a unui spa iu personal pentru copil, a (bani, locuin , hran , haine, obiectelor personale. utilit i, etc.), loc de munc , Oferirea de rechizite colare i juc rii, cu ocazia activitate satisf c toare; s rb torilor, din partea sponsorilor Dezvoltare personal : Educa ie Activit i de recuperare i abilitare prin includerea i abilitare/reabilitare, activit i copiilor n serviciile de specialitate oferite de C.E.S. planificate, sprijin pentru Speran a utilizarea tehnicii moderne Oferirea de sprijin de specialitate n cadrul activit ilor (telefon, PC, lift, interfon, etc.); academice n colile i gr dini ele integratoare, cu ajutorul profesorilor de sprijin i a voluntarilor (studen i de la facult ile de profil) Bun stare fizic : Starea mbun t irea st rii de s n tate prin participarea la s n t ii, satisfac ie, hran , activit i n cadrul cluburilor de psihomotricitate, activit i cotidiene (mbr cat, kinetoterapie. consum hran , toalet , igien Beneficierea de servicii medicale gratuite personal , deplasare, etc.); (stomatologie, pedopsihiatrie, medicin recuperatorie) Informarea i consilierea familiei privind educa ia pentru s n tate (igien personal a copiilor) Autodeterminare : Decizii Elaborarea i implementarea unui program de personale, controlul propriei activitate academic i ludic structurat, organizat vie i, selectarea alternativei pentru fiecare copil. dorite; Incluziune social : Mediu nconjur tor stimulativ i prietenos, sisteme de sprijin comunitar, participare i implicare social /comunitar ; Cre terea gradului de implicare social prin participarea la evenimente specifice vrstei (Serbarea pomului de Cr ciun, Carnavalul copiilor organizate de F.A. Speran a). Cre terea gradului de socializare prin accesul la resursele comunit ii locale i prin organizarea taberelor de var pentru copii i familiile lor, vizite i excursii liant ntre familiile cu copii cu disabilit i intelectuale. Oferirea de anse egale la educa ie pentru copiii cu disabilit i intelectuale, prin contribu ia sus inut a speciali tilor din proiect, concretizate n sesiuni regulate de advocacy. 158

Drepturi: Absen a comport rii discriminatorii de orice fel, lipsa temerilor fa de mediul nconjur tor;

Cre terea implic rii p rin ilor i a gradului de con tientizare a nevoii de autoreprezentare, prin participarea p rin ilor la ntlnirile lunare din cadrul Clubului P rin ilor, precum i nfiin area Asocia iei P rin ilor copiilor cu disabilit i. 4. Ct de substan ial este impactul proiectului / programului? 1. Ct de multe persoane beneficiaz de proiect / program? Grupuri int B rba i peste 18 ani Femei peste 18 ani B ie i sub 18 ani Fete sub 18 ani C i beneficiari a i avut pn n prezent? 0 0 180 120

35.Indica i tipul i nivelul de dizabilit i ale persoanelor incluse n proiect i num rul aproximativ al beneficiarilor serviciilor oferite.
Num r de Tipul adul i cu dizabilit dizabilitate ii u oar Num r de copii cu dizabilitate u oar Num r de adul i cu dizabilitate moderat Num r de copii cu dizabilitate moderat Num r de adul i cu dizabilitate sever Num r de copii cu dizabilitate sever

M/F

M
0

F
0

M
115

F
71

M
0

F
0

M
50

F
29

M
0

F
0

M
15

F
20

3. Ce alte argumente pute i aduce n sprijinul ideii c proiectul dvs. este deosebit de semnificativ / relevant? - proiect pilot (noutatea ini iativei i obiectivelor propuse) - structurare multidisciplinar - activit i riguros elaborate - monitorizare permanent - continuarea i dezvoltarea proiectului prin activit ile sus inute ca profesori de sprijin de c tre studen i voluntari de la facult ile de profil din Timi oara, dup ncheierea finan rii - crearea centrului de resurse pentru colile i gr dini ele de mas din Timi oara la nivel local - diseminarea modelului n alte 8 jude e din Romnia, prin prezentarea proiectului ca model de bun practic la nivel de Minister de resort la nivel na ional - men ionarea proiectului Por i Deschise ca model de bun practic n Raportul de ar la Bruxelles 2002 la nivel interna ional 159

- cre terea num rului de unit i colare i pre colare de mas integratoare, prin sprijinirea implement rii Ordinului Ministrului de resort (1999) cu privire la drepturile egale la educa ie i integrarea copiilor cu c.e.s. n nv mntul de mas - cre terea gradului de profesionalizare a cadrelor didactice i speciali tilor din sistem

5.

Ct de durabil (sustenabil) este proiectul dvs.? 1. De c i ani func ioneaz proiectul? 8 ani 17.Care este valoarea aproximativ a bugetului dvs. anual? Suma (aproximativ ): 15.000 $ n primii 3 ani din partea finan atorilor externi, i 12.000 $ din partea Consiliului Jude ean Timi n ultimii ani. a. Bugetul local contribuie cu __________ (%) _____ b. Bugetul statului contribuie cu ________ (%) _____ c. Sponsorii interni contribuie cu________ (%) _____ d. Donatorii externi contribuie cu _______ (%) _____ 18.Ar ta i cum au fluctuat aceste contribu ii n ultimii doi ani: Contribu ia A crescut Bugetului local x Bugetului statului Sponsorilor x interni Donatorilor externi (pune i un x n rubrica convenabil !) A sc zut x S-a oprit

a ncetat

19.Ce alte elemente pot dovedi c proiectul este durabil (sustenabil)? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ____________ 160

6.

De ce este proiectul relevant/semnificativ?

1. Care au fost cei mai importan i (maximum 5) factori care au contribuit la succesul proiectului? a. Calitatea echipei de lucru. b. Sprijinul financiar i material din partea finan atorilor. c. Implicarea i buna colaborare cu to i partenerii din proiect. d. Sprijinul i implicarea necondi ionat a p rin ilor copiilor cuprin i n proiect. e. Standardul profesional ridicat al sesiunilor de training i informare. 2. Ce dificult i (maximum3) a i ntmpinat i cum a i reu it s le dep i i? a. Rezisten a la schimbare din partea cadrelor didactice din colile integratoare (prin lipsa inform rii i a competen elor profesionale necesare muncii n educa ie incluziv , teama de a ncerca ceva nou, slaba motivare material pentru o munc ce presupune un efort mai mare); rezisten a la schimbare din partea p rin ilor colegilor de clas ; rezisten a la schimbare a factorilor de decizie la nivel local i na ional. - consiliere, informare, sprijin pentru familie i cadrele didactice - traininguri pe teme de specialitate - advocacy pentru integrare - ntlniri de lucru cu factorii de decizie - necesitatea alinierii la normele impuse de Uniunea European n domeniul educa iei, protec iei i drepturilor copilului b. Lipsa infrastructurii necesare i a unui sistem de nv mnt stabil, clar structurat, preg tit de schimbare, coerent, care s permit trecerea la un model de educa ie incluziv ; lipsa unei legisla ii n domeniu; absen a specializ rii profesor de sprijin din nomenclatorul oficial. - implicare n elaborarea unei strategii na ionale n domeniul educa iei integrate - lobby, advocacy, ntlniri, discu ii cu factorii cu putere de decizie i implementare a deciziilor c. Particularit ile psihoindividuale ale copiilor; limitele datorate deficien ei intelectuale; incapacitatea / capacitatea redus de a face fa cerin elor colaracademice n condi iile unei curricule nc rcate i stufoase (chiar i adaptat cerin elor educative speciale); lipsa coeren ei n planificarea procesului instructiv-educativ la nivel central. - planificarea unor activit i de sprijin, interven ie i recuperare pe termen lung, cu sprijinul sus inut al familiei i cadrelor didactice - continuarea activit ilor proiectului 161

36.Folosind cca. 20 de cuvinte, descrie i cum va evolua proiectul dvs. n urm torii doi ani. Datorit cre terii num rului de copii cu disabilit i intelectuale care trebuie integra i n nv mntul de mas , ne propunem continuarea activit ilor proiectului n aceeia i direc ie, cu l rgirea echipei de lucru. 37.Ce strategii ve i folosi pentru aceast evolu ie? (Men iona i doar 3) a. L rgirea echipei de lucru prin implicarea n activit ile de profesor de sprijin a studen ilor voluntari de la facult ile de profil din Timi oara. b. Sprijinirea cadrelor didactice n ceea ce prive te adaptarea procesului instructiv-educativ la particularit ile copiilor cu disabilit i intelectuale. c. Oferirea de servicii de sprijin, recuperare i reabilitare pentru copiii cu disabilit i intelectuale, prin includerea lor n procedurile terapeutice din Centrul Speran a. 38.Care sunt experien ele pe care a i dori s le mp rt i i altora? a. Reu ita integr rii n colile i gr dini ele de mas a copiilor cu disabilit i intelectuale (recompensa muncii noastre e dat de zmbetul copiilor i mul umirea familiei). b. Necesitatea luptei continue pentru ca schimbarea s poat avea loc i s dea rezultate pe termen lung. c. Eficien a procesului prin sprijinirea i implicarea activ a familiei i cadrelor didactice n activit ile de interven ie, recuperare, reabilitare. 39.Pute i g si vreun alt motiv pentru care proiectul dvs. s fie selectat pentru acest studiu (interesant, inovativ, creativ, model aplicabil, etc.)? a. Replicabilitatea modelului la nivelul ntregului sistem de nv mnt na ional. b. Proiect-pilot, derulat de 8 ani, ceea ce presupune experien e practice i teoretice, competen e i poten ial crescut de continuare i dezvoltare.

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Numele persoanei care a completat chestionarul: Psih. Alina Be tea Prof. Carmen Mircea Pozi ia n cadrul proiectului / programului: Coordonatori ai activit ilor profesorilor de sprijin voluntari

Data: -----------------------------------------------------------------Semn tura: --------------------------- tampila

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ANEXE Inclusion International, n colaborare cu organiza iile na ionale membre din Kenya (KAIH), India (PARIVAAR), Romnia (Incluziune) i Africa de Sud (DICAG i DSSA), realizeaz un studiu asupra diferitelor procese i metode folosite pentru a ob ine schimbarea social i mbun t irea condi iilor de via pentru adul ii i copiii cu dizabilit i intelectuale. Dorim s explor m, s n elegem i s descriem procesele de schimbare care au avut succes i s le facem cunoscute pentru a fi folosite i de al ii. Vom c uta r spuns la urm toarele ntreb ri: Care proiecte au condus la schimb ri durabile ale condi iilor de via pentru adul ii i copiii cu dizabilit i intelectuale din cele patru ri? Care sunt agen ii de schimbare cu cel mai mare poten ial strategic pe plan local, na ional i interna ional? Care sunt metodele cele mai eficiente pentru a ini ia i a men ine procesul de schimbare? Ce al i factori, att proiecte de interven ie ct i factori contextuali, sunt relevante pentru ob inerea unor schimb ri pozitive? Studiul este finan at de SIDA (Agen ia de Dezvoltare Interna ionala Suediei) i este coordonat de doi consultan i suedezi, angaja i pe baz de contract, de Inclusion International. Universitatea din Stockholm asigur expertiza tiin ific . Bun stare emo ional Siguran : S nu le fie fric de ceva sau de cineva, mediu ncurajant, acces liber ; Vom aprecia proiectele care: Ajut persoanele cu DI s nu mai fie nsp imntate de locuri sau persoane, ncurajeaz beneficiarii i ac ioneaz pentru un mediu social n eleg tor, f r discrimin ri; S aib un program clar i transparent, cunoscut de toat lumea; S aib o atitudine prietenoas , ncurajant fa de beneficiarii cu DI;

Mediu stabil i previzibil: R spuns pozitiv:

Program clar, program cunoscut la centru i acas ; Apar in tori i personal n care s aib ncredere, r spuns pozitiv fa de progresele realizate, reac ii de ncurajare din partea tuturor, acceptare; Independen , rela ii de egalitate cu ceilal i, ajutorarea celorlal i, absen a depresiei, sentimente de ncredere n sine i n ceilal i; O via sexual privat , s nu fie abuzat sau agasat de ceilal i, absen a situa iilor nepl cute, intimitate;

ncredere n sine / sentiment al propriei valori:

Dezvolt o atitudine de ncredere a persoanelor cu DI fa de familie, colegi, personal sau ei n i i;

Absen a abuzului fizic /sexual sau a agresiunii ia agas rii:

Promoveaz intimitatea, absen a abuzurilor de orice fel (fizic, emo ional sau sexual);

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Rela ii interpersonale Afilieri:

S fie activ social, implicat n rela ii (prieteni, colegi, vecini, rude), membru n grupuri; Rela ii bazate pe ncredere, admira ie, afec iune, persoane de care i pas , Intimitate, secrete personale, confiden ialitate, control al control al propriei vie i; Implicare sexual , via sexual proprie, protec ie, cuno tin e;

Vom aprecia proiectele care: Dezvolt pentru beneficiarii cu DI o atitudine /comportament de implicare n rela ii sociale cu prietenii, colegii, vecinii, rudele; Promoveaz rela ii de afec iune cu persoanele din mediul nconjur tor; Promoveaz confiden ialitatea i controlul asupra propriei vie i;

Afec iune: Intimitate:

Sex:

Prietenie:

Promoveaz o politic de diseminare a cuno tin elor legate de via a sexual i protejarea sexual Mediu prietenos, prieteni Dezvolt o atitudine de prietenie i n afara membrilor de aten ie fa de colegi; familie, prieteni pe care s se bazeze i la care s in ; Comportament extrovertit, deschis la rela ii, ncredere n ceilal i, s nu fie speriat de oameni; Cump rarea lucrurilor dorite, nevoi satisf cute, spa iu personal, bani de buzunar, posesiuni importante (locuin , cheie a apartamentului), siguran a locuirii ia hranei zilnice, munca n comunitate; S fie angajat, s fie productiv, satisfac ia muncii, salariu suficient, sentimentul unei munci utile; Performan e de nv are, diplome, sentimentul utilit ii, preferin e de nv are, nevoi i obiective de nv are; Stabilirea de obiective, , plan de via , dorin e, preferin e; Utilizarea unor tehnologii Dezvolt o atitudine /comportare de ncredere i deschidere fa de alte persoane; Proiecte care sprijin persoanele cu DI s aib i s administreze posesiuni, proiecte care lupt pentru o existen independent a acestor persoane i ob in de la apar in tori o comportare caracterizat de ncrederea n posibilit ile acestor persoane; Proiectele care realizeaz o activitate independent (sau cel pu in supervizat ) n comunitate a persoanelor cu DI;

Interac iuni:

Bun stare material Posesie:

Profesiune:

Dezvoltare personal Educa ie i abilitare:

Vom aprecia proiectele care: Promoveaz experien e de nv are i abilitare pentru persoanele cu DI; Promoveaz o via cu sens pentru beneficiarii lor; Abiliteaz persoanele cu DI s se

Activit i orientate spre un obiectiv:

165

 Asistare tehnologic :

(PC, Internet, telecomand , obi nuiasc i s utilizeze interfon, ascensor, tehnologiile moderne; echipamente electronice);

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Bun stare fizic Ocrotirea s n t ii: Mobilitate:

Sprijin satisf c tor pentru s n tate, autongrijire; Sprijinirea deplas rii, urcatul i cobortul sc rilor, excursii; Senza ii de bine generalizate, frecven a medica iei, teama de boal , ncrederea n via Preferin e alimentare, satisfac ie, sa ietate, sprijin pentru hr nire; Dezvoltare fizic , mobilitate, baie, toalet , igien personal , etc.;

Promoveaz automedica ia pentru persoanele cu DI i n elegera efectelor medicamentelor; Promoveaz dezvoltarea deplas rii independente i a abilit ilor fizice pentru persoanele cu DI; Ob in o bun stare de s n tate pentru beneficiarii lor; Ofer posibilitatea satisfac iilor alimentare pentru clien ii lor; Ofer i promoveaz sprijin generalizat pentru beneficiarii lor;

Senza ie de bine: Nutri ie: Sprijin general:

Autodeterminare Alegeri:

Control personal: Decizii:

Posibilit i alternative, selec ia posibilit ilor, s fac propriile alegeri, s - i aleag partenerii, hainele, etc. S fie consultat, s fie ntrebat, si se permits aibpropriile opinii, idei; Sia propriile decizii, s aib proprii bani, sau cheia de la cas (camer ); Dorin e personale, speran e, obiective pentru aceast s pt mn , anul viitor sau ntreaga via ; Pl ceri i nepl ceri, s fie l sat s fac ce dore te, s fie l sat s gre easc (s nve e din gre eli);

Ofer posibilitatea unor alegeri independente pentru beneficiarii lor; Promoveaz ideea c persoanele cu DI pot fi considerate persoane responsabile;. Ob in acceptul p rin ilor pentru aceste cerin e; i abiliteaz beneficiarii pentru aceste obiective; Promoveaz acest tip de atitudine pentru rudele persoanelor cu DI. i determin s resping institu ionalizarea;

Obiective personale:

Independen : Incluziune social Acceptarea re elelor de suport social: Integrare,

Mediu ncurajator, membru S determine beneficiarii lor s de grup, integrare devin membrii accepta i ai comunitar ( folosirea comunit ii; utilit ilor publice), s fie recunoscut, respectat; S promoveze i s ac ioneze ca S fie acceptat n beneficiarii lor s devin membrii comunitate i s accepte ne-institu ionaliza i ai societ ii;

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participare comunitar :

acest statut;

Drepturi Absen a discrimin rilor nedrepte:

Mediu f r limit ri:

S nu i se pun nume/porecle, s nu fie l sat s a tepte f r explica ii, s nu fie considerat anormal, s existe ncredere n abilit ile lui/ei; Absen a fricii de noi medii (teama de locuri noi, de ora e sau ri necunoscute, teama de a c l tori;

Ob inerea din partea comunit ii a unui tratament echitabil pentru beneficiari, persoane cu DI;

Ob inerea din partea beneficiarilor a unei atitudini curajoase fa de locuri noi, ora e sau ri necunoscute;

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