Annual Report 2004

ANNUAL REPORT 2004

PENTRU VOI FOUNDATION & DAY CENTER

Who are we? A non-profit NGO, established in 1996. Our mission To increase the quality of life for persons with intellectual disabilities Our philosophy Inclusion - it is built on the belief that all people are equal and should be respected and valued, as an issue of basic human rights.

Table of contents Pentru Voi, part of Timisoara’s community - Laila Onu, executive director Service users........................................................................................................................4 Provided services..................................................... ...........................................................5 Day services........................................................ ....................................................5 Residential services........................................................ ...................................... ..8 Community support........................................................ ........................................9 Self-advocacy............................................................. ...........................................10 Training & publications.........................................................................................12 Projects 2004........................................................ .............................................................13 Transition to adulthood.................................................. .......................................13 Processes and methods used to achieve improved life conditions for persons with intellectual disabilities...........................................................................................14 Parents Mobilization Action Group.......................................................................15 Model Site............................................................. ................................................16 Capacity building...................................................................................................16 Learn to listen......................................................... ..............................................16 It’s normal to be different........................... ..........................................................18 Events................................................................ ...............................................................19 Plan 2005...........................................................................................................................24

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Pentru Voi - part of Timisoara’s community During 2004 we continued our efforts for the inclusion of persons with intellectual disabilities in the community of Timisoara; based on our belief that all people are equal and should be respected and valued, as an issue of basic human rights. One of our priorities was to fundraise for a new building, specially designed to fulfil the needs of persons with profound disabilities, autism and challenging behaviour. Until now, almost nothing was done for these persons in Romania, so we decided to focus our efforts to develop community services adapted to their complex needs. The fundraising campaign targeted in the first place the external financers. We are thankful for the support of our “traditional“ partners from the Netherlands: Foundations “Friends of Speranta” and WACR, which have made the fundraising campaign in the Netherlands. We have a positive answer from the organizations which have financed our other projects in the past and which visited us. This proves that they are satisfied with the way we used their previous funds: Rotary Club Elst, Cooperative Netherlands Foundations, Foundation of van Geel family. We are very happy that our work is recognized by our financers and they trust us. We also received a positive answer from an old friend and supporter - Rotary Club of Timisoara, Romania. We are very grateful to all those who accepted to finance our Foundation again, and thanks to their support we can start the construction in 2005. For the time being, 90% of the expenses are covered and, in order to complete the budget, we will start a fundraising campaign addressed to the business community of Timisoara, as we want to involve it more in our activity. We felt their support when we have organised the first edition of Special Olympics in Timisoara, on the 4th of December. The competition had a big success - a high number of athletes with intellectual disabilities participated with enthusiasm. All the participants are winners, even if some of them didn’t receive any medals: they defeated the exclusion and isolation trough sports. The athletes of Pentru Voi participated in the national competition, with very good results, and one of our service users, Emilia Vaduva was elected as a member of the National Special Olympics’ Board At the beginning of 2004, we started the work in our bakery, and in May we celebrated, with our friends and financers, the official opening of the bakery. By this occasion, honoured by the presence of His Excellency Mr. Jan Wolthers, the Ambassador of Netherlands in Romania, Mr. Gheorghe Ciuhandu - the Mayor of Timisoara - and Mr. Laurens Elmendorp have signed the Cooperation Convention between the Local Council of Timisoara and Pentru Voi Foundation. This convention is the official document of our public-private partnership recognized as a model of good practice in Romania In order to fasten the relation between “Pentru Voi” and the local community we organized for the first time the Pentru Voi Gala on 3rd of December, the International Day of Persons with Disabilities. The Gala was organized in cooperation with TeleUniversitatea, our media partner for many years in the campaign, “Learn to listen! It’s normal to be different”. It’s an awareness raising campaign regarding the rights of persons with disabilities, financed by the Open Society Mental Health Initiative. We enjoyed the evening spent at the Club “The Note” together with the service users, their

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parents, our staff, local authorities, financers, companies which have employed our service users from our supported employment program. The elections for the Parliament and Presidency gave us the opportunity to try to raise the attention of the candidates and political parties on the problems of the persons with intellectual disabilities. We organized in Bucharest in cooperation with Inclusion – the Federation of Organisations for Persons with Intellectual Disabilities from Romania the roundtable “Political support for the employment of persons with intellectual disabilities”. The idea of organizing this roundtable started from the fact that inclusive employment is the most effective way to increase the independency of the persons with intellectual disabilities. As in the last 10 years, we had the support of Mr. Victor Wahlström, the former president of Inclusion International. Unfortunately 2004 brought important legislation changes, which are jeopardizing our work and making more difficult the development of community based services at national level. We believe that it is a mistake that law 343/2004 limits the possibilities to set up and finance social institutions and services for persons with disability only to County Councils and excludes Local Councils. This standardized and one way approach is opposite to the European trend that involves flexibility, diverse approaches from situation to situation and taking responsibility by the local community, to whom the person with disability belongs It should be up to the local community to make accessible all the provided services: educational, medical, transportation, loisir, etc. As a result of our campaign made with Inclusion from Romania, a new article was inserted in Ordinance 86/2004 which gives to the Local Council to possibility to continue financing the institutions for persons with disabilities. This campaign was carried on during a long period of time, with considerable efforts on the detriment of our other projects, especially of our new Day Centre. It also raised big question marks to our financers and collaborators from abroad, for whom is hard to understand the legislative changes, which jeopardize the functioning of some of the few examples of good practice from Romania. It was a learning experience for us - it is extremely important to get involved at national level, to become a reliable discussion partner for the governmental authorities before the elaboration of any regulation in the disability field. Finally, I would like to express my gratitude to all those who helped “Pentru Voi” to exist and to develop: service users, parents, staff members, Board members, local authorities, financers, collaborators, friends, media. My appreciation goes to the open spirit and the respect for diversity, which characterize Timisoara, the town to whom we, the people from Pentru Voi, belong as well.

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Our service users 112 adults with intellectual disabilities and their families. Type of disability

Gender

11% 15%

40%

46%

34%

54% Severe intellectual dis.

Medium intellectual dis.

Severe multiplied dis.

Medium multiplied dis.

Women Age

Men Origin

2%

23%

11%

75%

18-30

30-40

89%

>40

Institution

Distribution according to type of services

6% 26%

28%

copy-center 24%

47%

19%

27% Supported employment

Activity fields 20%

13%

7% 13%

7%

tailoring carpentry

Workshops Daycentre activities

Family

40%

Constructions Food industry, bakery, cook Clothing industry Cleaning, service Seasonal jobs – newspaper sales Cleaning lady

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23%

administrative bakery

Provided services Day services 1. Workshops

Copy center In 2004 we developed the printing services – we have new devices and at present we produce Pentru Voi magazine and the brochures in the day center. The pedagogue attended a specialized training, in order to improve the brochures’ qualities. The workshop is coordinated by a group leader and there are 10 service users here.

Tailoring - Handicraft Due to our development, out of two similar workshops we made one. There are here service users able to make by themselves a product, from the beginning to the end. 17 service users work here; they are coordinated by two pedagogues. .

Work-based-on-contract This is a new established workshop. It’s activity is based on the two long term contracts we closed – one with a packaging company and one with a printing company. The 18 service-users were selected based on their working abilities It became the largest group in the day center, coordinated by two group leaders. The aim of his workshop is to educate the service users for the regular Labor market - discipline, relationships with colleagues, time limit, effort aso.

Administrative workshop It is a new workshop, where service users with higher physical abilities work. They do maintenance activities that are needed in the day center and provide, when necessary, support to the based-on-contract workshop. There are 11 service users here, and two pedagogues. 5

Gardening The 12 service users continued the ecofertilization with natural manure. We trained the service users in gardening, so the quantity of the vegetables produced in the garden increased.

Bakery The bakery is a workshop where we tried to provide jobs to the service users from DINU that couldn’t find a job on the „real” market. During 2004 we employed, part time and with working contract, two service users, they are supervised by a baker. We also have an administrator, in charge with coordinating the activity of the bakery. The working environment is similar here to the one in a regular job; this helps us in analyzing the problems that might occur when employing a service user. Among the most important accomplishments in the bakery is the fact that we manage to supply bread to the kitchen of the day center during the whole year; we also managed to sell in real market&competition conditions –it’s true that it was not an important amount of money that we cashed, but it’s an important step forward. We have all the documents and production license. And, tryst us, it was not easy to obtain them!! One of the most important difficulties is the ups and downs in the quality of the bread, which leads to a decrease in the number of the customers. All the workshops function on economical basis, in order to increase their selfsustainability we sale the products and the services.

2. Activity groups Through the activity groups we aim at developing the personal autonomy, the self-help, communication and social abilities. We provide individualized programs according to the personal needs of each person, as well as multi-sensorial stimulation and relaxation in the snoezel room. The snoezel activity is coordinated by a pedagogue that implements individual programs of relaxation or stimulation, as well as learning programs.

Green group - 10 service users with medium and severe disabilities

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Yellow group - 14 service users with severe disabilities Weekly activity group – provides, at present, support to 10 youngsters with severe intellectual disabilities and/or challenging behaviour, during three hours per week. We developed individual activity programs in order to support the service users with problems in coping with a daily, regular program. There are three pedagogues responsible with this group. This weekly group is a short term way of solving the needs of services of the new services users; on a long term, the answer is a new day center.. We have at present only a building, and a great number of admission requests. In the same time, we feel that we are able in terms of human resources, knowhow, financial sustainability to provide services to a greater number of persons. We lack only the space to do it and we hope to solve this issue in 2005 by building a new day center.

The multidisciplinary team had an important activity in 2004, as it follows: • • • •

Organizing meetings with parents, family members and case managers of those in the residential services (95% of the cases were discussed) Each three month it had one-topic-meetings with the parents (the subject to be discussed was established at the parents’ requested) Implementing, once a month, a training program addressed to the pedagogues working with service users with severe disabilities. Interfering, when seizures occurred, and drafting individual programs

3. Employment In 2004 19 service users had a job – regular or supported. Some of them are employed full time, for an unlimited period of time, based on a working contract; some of them – for a trial period or part time. By the end of 2004 there are 26 service users with working potential, and the figures are: • 8 service-users, already employed at the beginning of 2004, kept their job and still work • 7 service-users were employed during 2004 and still have the same job; of course, they received support during all this time • 4 service users gave up on working: one girl because the employer didn’t want to close a working contract; one boy changed three jobs and couldn’t adapt to none of them (he’s not motivated to work); two girls, even if they want to work, are not enough trained (they came recently in our day center) – this is why we failed for the moment in the attempt to find them a regular job (they started to work but after only one day have been fired, as they couldn’t accomplish their tasks).

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Residential services DINA, DINU, LAURA Between 18 and 21 youngsters lived, during 2004, in the three group homes. These fluctuations were caused by the attempts to ensure the physical and emotional well-being of the service-users, by responding to the changes in their life: a new job, reactions to unacceptable behaviours, difficult neighbourhood relationships, illness, crisis situation in the family, inclusion in the family – this is one of the happiest cases. Three young women, one coming from her own family and two from institutions, were included in DINU project. Two of them still try to adapt themselves to the new life style and to learn the rules of a more structured environment than in the family, but less oppressive and more stimulating than in the institutions where they used to live. The third one, coming from a center from Deva, was selected by the multidisciplinary team to live in DINA and work in the bakery, but, after only three month, she had the chance to move together with her mother and brother in Medias. We also changed the structure of the protected houses: boys and girls live at DINA as well as DINU – we have noticed that some aspects of the daily life, as personal hygiene, verbal aggression, self-housekeeping are better handled in this way. We have also did some movements from one house to another, in the benefit of the individuals (from DINU to DINA for two service users that found a job in Timisoara) or in the benefit of the whole group (from LAURA to DINU, when conflicts became chronic). The supported employment became one of our priorities for the youngsters in the residential services. Four of them graduated baker trainings and six work within our day center, as they acquired enough skills in order to accomplish their tasks but they can’t, for the moment, face the social interaction in a competitive and non-supportive environment. The Ministry of Labor continued in providing a grant for the 21 service users – 600.000 lei/month/person. This money were used in order to increase their quality of life – we bought them personal items like blender, sandwich toaster, CD player, radio and alarm clock aso. We were also able to celebrate each birthday, with cakes, a lot of guests and real parties.

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The social life and leisure activities were also important during 2004: summer school in June (where only the employed ones that didn’t have holiday in that period were not present), picnics, parties, social accompaniment. We always have in mind our aim – inclusion – so we encouraged the service users in keeping and developing relationships with persons outside Pentru Voi, as well as interacting – visits at each-others houses, social evenings etc. We are aware on the fact that in our houses, like in any living system, the only permanence is the change. We try to cope with the change, to make it a process of growth and development for each persona and for the organization as a whole.

3. Community support Family support, counselling Through this service we provide: - Individual counselling - Emergency medical care - Parents’ counselling (at request) - Financial support for the families with poor material situation 38 service-users and 23 parents were individually helped, on topics like self-help, diet, sexual education, intimacy, hygiene. The families of four service users received, during the year, food and seven other were helped to pay their bills.

Social life and leisure The youngsters from Pentru Voi, like any other person at this age, express the will to meet outside the family, to party, to talk, to dance. This is why, each month, we held Pentru Voi Club – an occasion to celebrate birthdays, to participate in contests and play games. Another occasion to spend time together was the autumn carnival that took place in October. Every body played roles from fairy tales, and almost all the costumes were made by themselves, in the tailoring workshop. As we started at Pentru Voi an official self advocates group, it has the initiative to organize trips in different monasteries around Timisoara, to got o the Zoo, to the museums or in the botanical garden and parks. Everybody was delighted with the idea.

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In order to reward their work in the workshop, the service users went out together – several times – to the cinema, or to eat in town. For some of them, these are the only occasions to spend some time outside the house. For most of those coming in the day center the summer school is the only way to go outside Timisoara during the holiday. In 2004 they went in the mountains, where they made sports & trekking, they organized discotheques, they attended selfadvocacy trainings and sessions of music therapy. In December they played Christmas carols and had, in this way, the opportunity to meet new people, journalists working in the newspapers we are working with, employees in the companies with whom we are co-operating. Rotary Club from Timişoara invited, in December, a group of youngsters from our center to perform a show in the Eldery Home.

4. Self-advocacy The self-advocates from Pentru Voi attended different events in Budapest, Dunkerque, Sinaia and Timişoara. In February Pentru Voi, together with the European Disability Forum, Inclusion from Romania, EDF, The national Disability Council and Parents Mobilisation Action Group organised the conference Community Living for Persons with Intellectual Disabilities. By this occasion the self advocates had the chance to speak about themselves and their experiences. We have also presented two video personal testimonies (filmed during the media campaign Learn to listen, it’s normal to be different 2003). The bread served during this event was baked in the bakery from Sacalaz. More details on the conference, please find at page 17.

April is, in Timisoara, the Month of the Volunteering. By this occasion, we had a stand in Opera’s Square and the youngsters from Pentru Voi sold some of the products they made in the workshops.

UNAPEI – the national association of the parents of the persons with intellectual disabilities from France – organized a meeting for the persons with intellectual

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disabilities. Most of the attendees were members of the self-advocates organisation Nous Aussi. The aim of the meeting was to explain the EU enlargement. One person from Hungary and two from Romania (Pentru Voi) presented the situation of the disabled persons in their own country and the way the enlargement will influence the social policy. Gabriel spoke about the bakery and his life in DINU house; he even made a very appreciated comparison between the work in the bakery and the enlargement of the European Union. The general assembly of Nous Aussi took place the next day. In June, Adi, one of the youngsters working in the tailoring workshop, participated, in Budapest, in a training on media campaigning and the involvement of the service users in planning, organizing and implementing the activities of such campaigns. Didona attended a conference on music as therapy in November. Emilia is now a member in the board of Special Olympics. She was invited in the official opening of the national games in Bucharest. She spoke in the press conference, as representative of the persons with disabilities from Romania. The event took place in the Embassy of the USA. Cristian Ţopescu from the Board of Special Olympics România, Christa Velkov, Special Olympics Europe, Octavian Morariu, National Agency for Sports made also public statements. During the games, the athletes from Pentru Voi gained eight medals, in athletics and tennis. Emilia participated also in Budapest, in October, in the regional conference Special Olympics Europa/Eurasia, where she took part in the contest and made a speech.

Thanks to these results and and to the interest towards sports, Pentru Voi, together with Special Olympics România organized in Timisoara a sport competition in football, athletics and basketball. The world champ in gymnastics, Simona Amânar, was also present in the event and youngsters with disabilities from the whole county competed. In October we held the seminar It’s normal to be different (details – page 17). We had 35 participants from all over the country. The last day of the meeting was dedicated to self-advocacy. Besides the professionals speaking about self-advocacy, three persons with disabilities made personal testimonies. The presence of the self-advocates in the

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events we organize is one of the most appreciated aspects, as the evaluations of the participants show. Another important step forward toward a self-advocacy movement in Romania was made in November, by the occasion of the general assembly & elections of Inclusion from Romania. It is for the first time in Romania that two persons with disabilities are members in the board of an organisation representing their interests and protecting their rights. One of the two persons is Gianina, a young woman with disabilities that used to live in an institution and that at present lives in LAURA, the independent living facility, and has a job. We realized, in the frame of the summer school, trainings in order to teach 80 persons with disabilities about self-advocacy (knowing the rights and the obligations as member of the society). The service users enjoyed the mixture of relaxing activities (discotheque, walks, sports, games, contests, fire camp) and training sessions (social abilities, communication, self-help). We continued publishing Pentru Voi magazine - for issues, 500 copies each. It is the first Romanian magazine realized by persons with disabilities, which was free of charge distributed to NGOs and service providers in the country.

5. Training provider and specialized publications editor During 2004 the Model Site project had a different structure than before – we held only in country trainings. Two sessions took place, one in May, on organizational philosophy, values, ethical code, community based services, inclusion, and the second one was held in October – self-advocacy, person centred planning, support intensity scale, values, working procedures. The staff from Pentru Voi attended training sessions in Romania, Hungary, Croatia, on: autism and Asperger syndrome, social enterprise, transactional analysis, sexuality, media campaigning, gentle teaching, music as therapy. We published – with the help of the service users working in the copy center - a number of information materials that may be distributed, free of charge, to the interested organizations, at request: - Self-advocacy – beliefs, values, principles - Person centred planning and support intensity scale - Asperger Syndrome – practical strategies for classroom work ( a guide for the teachers) - What is Asperger syndrome? - Ethical code - Supported employment - Why do I want to work? (a leaflet in easy-to-read language). These materials may by read on-line, by accessing www.pentruvoi.ro , under Publications.

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Projects 2004 Transition to adulthood Purpose of the grant was: To train the staff of Pentru Voi Foundation and the parents in managing young adults with autism, Asperger syndrome and challenging behaviour • To provide support services based on their individual needs to 15 young people with autism, Asperger syndrome and challenging behaviour • To spread the knowledge about transition to adulthood of the teenagers with autism, Asperger syndrome and challenging behaviour •

At the beginning of December we organized a training on “Multidisciplinary approach of diagnostic and management of adults with autistic spectrum disorders” The seminar was held by Prof. Tony Holland, Professor in Developmental Psychiatry (Learning Disability) in the Department of Psychiatry at Cambridge University and Hellen Aguire, speech and language therapist. The topics of the training were Diagnostic and secondary complications of adults with autistic disorders and Interprofessional management of autistic spectrum disorders. The evaluations of the participants revealed that the module was a successful one and that there is a major lack of information on autism, especially on Asperger syndrome and mainly for the young adults. As a result of the training, the attendees acknowledged the needs to redefine the history of the person and to understand each individual and the importance of the team work. As future training topics, the participants suggested: How to deal with couples?, How to support the families that have children (teen-agers or adults) with intellectual disability?, Depression and intellectual disability; Comorbidity, Individual work, Sexual life – persons with disabilities & their families One of our main difficulties is the fact that in Romania there are no adults with the diagnosis of autism or Asperger syndrome. This is why we worked together with Casa Faenza – an association from Timisoara dealing with children with autism – in order to compare the data we have – for children and adults – and to find out where the problem is and where the teenagers with autism disappear once they become adults. We plan to organize trainings, because we consider that the reason for this “disappearing” is the lack of knowledge that makes the psychiatrists to diagnose these people as 13

“schizophrenics” or “psychotic”. It is very important to teach the staff in this particular field, to spread the knowledge in the Romanian environment and to develop a support service for this group. The multidisciplinary team of Pentru Voi assessed 14 young people with Asperger syndrome and autism and drafted personal future plans and support plans. Targeted services are provided on daily basis to each person - activities in the day center and the group the person belongs to, the personal plans, the future plans, the behavioural program, proactive and reactive measures For the assessment, the psychologists used House Tree Person Test, Raven Test, direct interview and psychological observation (during 2-3 days, one hour per day, the person is observed, under different behavioural aspects – personal autonomy, psycho-motility, awareness on time and space, emotional development, communication, relationships).

Financed by

Open Society Mental Health Initiative, Budapest

Study of Processes and Methods Used to Achieve Improved Life Conditions for Persons with Intellectual Disabilities 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, until February 2006, understand and describe successful change processes and learn from them. • 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, locally, nationally and internationally? • 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 coordinator of the Romanian team is Mircea Alexiu, Social Work Faculty, Timişoara; the members of the team are: Aurora Toea, executive director CRIPS, Radu Sergiu Ruba, vice-president National Disability Council, Laila Onu, vice-president Inclusion from Romania. During 2004 several meetings of the team took place, in one of them the international coordinator of the project participated. Projects who want to be part of the study had to fill in a questionnaire and describe the project. In each country the research team will

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look at the project descriptions and select the three most interesting. These three projects (from Alba-Iulia, Bistriţa and Timişoara) will be carefully investigated. In each country the researcher will write a report to describe the three good projects and everything that helped them succeed. Twenty projects that seemed good but were not selected for the investigation will be presented in short in an appendix of each country report. The reports will be printed in a booklet format.

Financed by SHIA Sweden

Parents mobilization action group PMAG Romania is a joint venture between Inclusion International, Inclusion Romania and Pentru Voi Foundation to promote intellectual disability. It started in 1998 and will finish in 2006. A steering group is appointed; sponsors are The Swedish National Organisation of Persons with Intellectual Disabilities, the Swedish Organisations of Disabled Persons International Aid Association and private donors. During 2004 three training sessions took place and we continued our lobby activities at national level. Two major events in this respect are: first the conference from Timisoara (February) (for details see page 18) where representatives of national and local authorities were present – by this occasion the participants agreed that community living for persons with intellectual disabilities is the aim, and publicprivate partnership is a condition for success. The second important event was the round table in Bucharest (November) – the topic was Political Support for the Employment of Persons with Intellectual Disabilities. Unfortunately only 2 candidates attended the round table: Mr. Gheorghe Ciuhandu, president of the Cristian Democratic Party and candidate at the Presidency of Romania and Ms. Constanta Popa, MP and candidate from Great Romania Party. After the meeting Ms. Constanta Popa MP, made a statement in the Parliament about the round table and emphasized the difficult situation of the persons with intellectual disabilities in Romania. During the year we provided assistance to the member organisations of Inclusion from Romania, we did study visits, we published a newsletter, we attended the meetings of the National Disability Council, and had inputs to the Disability Memoranda and the country report on the situation of disabled people in Romania. We monitored the legislative process, and sent position

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papers when we considered appropriate to do so – ordinance 68, law 343. Pentru Voi also endorsed the Memoranda addressed to the Government by Amnesty International concerning the critical state of the patients and residents in psychiatric hospitals. In august the board of Inclusion had a meeting and drafted a strategy until 2007 and in November the General Assembly took place. Chair of the meetings was Victor Wahlstrom, from Sweden – he’s the coordinator of the project. In January he was decorated by the President of Romania, as a recognition of the activities he developed in order to support the disability movement in our country.

Financed by SHIA Sweden

Model Site In 2004 we organized two in-country training sessions. By the occasion of the first module, in May, we acknowledged the differences between the organisations and we decided that, in the future, we will split the NGOs in two groups – beginners and developed, and held the seminar according to each group needs. The first module, with 14 attendees, focused on organisation management, public-private partnership and community based services. The topic of the second module, co-financed by NAPH, with 42 participants, was: person centred planning, support intensity scale, challenging behaviour, values, ethical code, working procedures, self-advocacy. Extremely appreciated were the personal testimonies of the self-advocates. In fact, the involvement of the service-users is one of Pentru Voi’s events recognition marks. Financed by

Open Society Mental Health Initiative, Budapest

Capacity Building Pentru Voi is a partner in the Capacity Building project. In Romania this project – coordinated at international level by Inclusion Europe – is implemented by the federation Inclusion. Financer is Open Society Mental Health Initiative, Budapest. In the frame of the project we have to organize 20 training sessions in order to develop the participants’ abilities in implementing community services for persons with disabilities. The second purpose of the project is to

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increase the federation’s capacity as a training provide and to transform it in a resourcecenter for the intellectual disabilities issues in Romania.

Learn to listen – It’s normal to be different Through this project we wanted to increase the public awareness on the intellectual disability issue. We transmitted our message on the internet (by up-dating the web page www.pentruvoi.ro ), through the TV (video clip, talk-shows, reportages), written media (articles), and printings (leaflet, brochure). Teleuniversitatea TV produced, end of November, a talk show on the employment of persons with intellectual disabilities. The discussions took place between one of the service users that works, the director of Pentru Voi, the job seeker, and one pedagogue. We wanted to include the employers, but we faced the refuse of the representatives of the companies hiring disabled persons – they are afraid of public appearances, because they think that, due the publicity, they will be more controlled by the authorities. They don’t care about the positive image they’ll have, about the social involvement, about the impact their statement would have on the community’s perception of the persons with intellectual disabilities. We wanted to reward the most open and positive employers on hiring persons with intellectual disabilities, and to make a public event of their positive attitude. But this is one activity that we didn’t accomplish. We haven’t predicted that the employers will be reticent in making public appearances. We contacted the two most important of them, presenting them the project and trying to organize the events. They firmly refused being afraid of the fact that, if they are seen, more authorities will come to analyze in depth their activity, that they will be more controlled, worrying about potential problems. We asked the job seeker to contact other employers; they all gave the same answer. In December 2nd, Pentru Voi organized the biggest event in frame of the campaign. The first Gala, meant at providing an informal environment that brings closer all those that support Pentru Voi’s activities in providing quality services to persons with intellectual disabilities. The aim is to create in Timisoara an accessible and open society. The Gala was also an occasion to reward all the partners and the persons who endorsed and supported our actions during the year. We invited journalists, companies, employers, service-users, parents, donors, partner NGOs, public officials, and artists. We gave diplomas and prizes. It was a high quality event, appreciated by all the participants. It took place in one of the best locations in Timisoara, Club The Note http://www.thenote.ro/home.php and the program was very special – one of the service users and a professional TV reporter

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chaired the event, which welcomed the participants and introduced the guests. We had artistic performance of the service users, video projections – video-clip 2003&2004, personal testimonies, classical music – students from the Music Faculty, jazz concert – Aquarium Quartet. In the same time, a photo exhibition – with portraits of the service users from Pentru Voi – was installed on the walls of the club. We made previous announcements on the event and sent press releases. The Gala had very good media coverage and we received direct feed-back from the journalists that they consider it a great initiative, advising us to continue it. This is what we plan to do, to make it a permanent event, around 3rd of December, each year with a different main topic. As the one for 2004 was employment, for 2005 it might be independent living. Teleuniversitatea TV broadcasted the gala. The service users from Pentru Voi produced, in the copy-center (edit and design), under the coordination of the staff a leaflet, in easy-to-read language. The leaflet introduces a young girl with intellectual disabilities, the rights & liberties she has, the advantages of having a job and the support she is entitled to receive. They also published a printed material on the employment of disabled persons. The topics are: 1. Persons with disabilities – a valuable resource for the company 2. Supported employment – a service that provides consultancy to the companies in employing and including in the team the persons with disabilities 3. Disability – an issue that concerns the whole community 4. Legal information

As we had general elections in November 2004, during the electoral campaign, we organized a round table in Bucharest. The topic was Political support for the employment of persons with intellectual disabilities. Financed by

Open Society Mental Health Initiative, Budapest

It’s normal to be different Objectives • •

To support and promote the self-advocacy movement To promote the person centred planning approach among the service providers

•

To promote an ethical code and the working procedures for the service providers

•

To promote the supported employment

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Results •

A brochure on person centred planning

•

10 persons with intellectual disabilities were trained as bakers, cooks and hair dressers.

•

35 professionals attended a seminar on ethical code, working procedures and selfadvocacy. It was one of the events that raised the interest among the actor in the disability field in Romania – we had a large number of participation requests. But, as we had a limited number of places, we were forced to refuse some of them. This showed us that there is a great need of training and experience exchanges, this is why we made our choice in continuing organizing this kind of meetings.

•

We edited and published an ethical code, as a result of the seminar

•

We translated and published a brochure on self-advocacy

Events Conference Community living for persons with disabilities – public-private partnership The conference was organized by Inclusion from Romania and “Pentru Voi” Foundation in liaison with the European Disability Forum, the Initiative Group for Establishing a National Council on Disability in Romania and PMAG Romania. Sponsors were the European Commission and SHIA Sweden. The discussions focused on community living for persons with intellectual disabilities and their families as a goal and on public-private partnership as a condition for success. There were three focus groups, on legislation, quality standards and public-private partnership. The event was held in Timisoara, as it was stated in the statement of the previous conference organized in Timisoara – To be on your own feet! (March, 1011, 2003). The chairs of the event were Mr. Victor Wahlstrom, global coordinator of PMAG project and former President of Inclusion International and Mr. Constantin Stoenescu, President of the National Authority of Persons with Handicap. More than a hundred persons, among them representatives of Inclusion from Romania and local authorities from 14 counties attended the meeting. Key speakers were Anne de Ligne, European Commission Delegation in Bucharest, Geert Freyhoff, Director Inclusion Europe, Brussels, Judith 19

Klein, Director Open Society Mental Health Initiative, Budapest, Sophie Beaumont, European Disability Forum. Representatives of the Embassy of UK (Bob Napier and Oana Lupu) and of Amnesty International (Ivan Fiser) took part to the conference. Please find attached the statement approved by the conference. All the participants agreed to a common resolution of the conference, which can be downloaded from www.pentruvoi.ro The bread served by this occasion was provided by the persons with intellectual disabilities working in the bakery workshop from Sacalaz.

Accreditation Since April „Pentru Voi” Foundation is accredited – according to Government Decision 1176/2003 -, as social services provider, by the Ministry of Labor and Social Affairs, through the National Authority for Persons with Handicap. The services included in this accreditation are: a) Day services b) Residential services c) Supported employment d) Training provider and publications editor e) Self-advocacy

Official opening of the bakery The bakery is the newest workshop of Pentru Voi four youngsters with intellectual disabilities work here; they have baked the first bread at the beginning of January It wouldn’t have been possible to build the bakery without the support of a group of Dutch sponsors, like WACR, The Co-operating Netherlands Foundations for Central and Eastern Europe, students from Rijn College Arnhem, van Geel Family. The Town Hall from Timisoara supports the running of the workshop. His Excellency, the Ambassador of the Nederland in Bucharest, Mr. Pieter Jan Wolthers, and the Mayor of Timisoara, Mr. Gheorghe Ciuhandu, honoured the event. 20

Europe in Action Inclusion Europe and NAMHI Dublin organized, in May, the international congress on the fight against discrimination of the persons with intellectual disabilities and their families. The main topics were inclusion in education, living in society, discrimination in work and democracy – the main focus was on the European elections from June 2004. Laila Onu, executive director of Pentru Voi Foundation, was invited as speaker, in the frame of the workshop on What do parents believe about inclusive employment? It was addressed to the parents and families of the persons with intellectual disabilities.

European Disability Forum The General Assembly of the European Disability Forum took place in Warsaw, between 14 and 16 May. By this occasion the National Council of Disability from Romania was accepted as observer member. Inclusion from Romania is founder member of this national council and one representative of Pentru Voi attended this event.

Round table Open Society Institute Budapest, through MDAP and EU Monitoring and Advocacy Program carry on a project on monitoring Access to Education and Employment of Persons with Intellectual Disabilities. The project is implemented in 15 countries and will be concluded by the publishing of 15 national reports; the Romanian partner NGO is Pentru Voi. We organized, in May, a round table in Bucharest, in order to discuss the draft of the report. Attendees were representatives of national authorities (Ministries of Education, of Social Affairs, National Agency for Employment), NGOs (in the field of human rights, children, intellectual disability, ethnical minorities, mental health), EC Delegation in Bucharest, self-advocates. The national report will be launched next year and OSI will publish a brochure, with all the 15 reports, which will be launched in Brussels.

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Transactional analysis Joost Levy, Dutch psychologist specialized in transactional analysis, attended in July the European Transactional Analysis conference organized by the West University. By this occasion he held, at Pentru Voi, a training on sexuality, relationships with the parents, internal communication. The members of the multidisciplinary and managerial teams participated in the training.

Supported employment Resource and Information Center for Social Professions Bucharest organized a training on Mediation of the professional inclusion of the person with disabilities. Being one of the first centres in the country to provide supported employment services and to promote this concept, Laila Onu was invited as a trainer – she presented the pioneering experience related to the training and employment of persons with intellectual disabilities.

Music as therapy At Pentru Voi music as therapy is already used from several years, having a positive impact on the service users with severe disabilities. This is a result of the trainings attended by three pedagogues. In order to monitor the efficiency of this kind of therapy, three of the British trainers visited Pentru Voi day center in October and worked together with the pedagogues and the service users.

Together through art This conference, that took place in Sinaia, in November, underlined the need to diversify the working procedures, the importance of the promotion of the rights of the disabled people and the need for permanent training of the staff. Pentru Voi was represented by a pedagogue and a service user. Among the participants were specialists from UK, Greece, Norway, Germany.

Included in society The final conference of the European project Included in society took place in Bruxelles. It was organized by Inclusion Europe, Open Society Institute, Mental Health Europe and Autism Europe. The project has analysed the conditions in and prevalence of large residential institutions for disabled people in Europe. At its final conference, the project partners discussed their findings and policy recommendations with international specialists on residential care and deinstitutionalisation issues, as well as with policy decision makers and other persons committed to disability issues The conference marked the beginning of a European movement for more and better community-based residential services. People with disabilities have the right to live included in society and no longer want to be segregated in large residential institutions. 22

A publication with all findings and policy recommendations of the project was released during the conference. Romania was represented by Laila Onu, executive director of Pentru Voi.

Citizen in the center This conference took place in The Netherlands, in November; the topic was partnership between NGOs and authorities, working conditions for social NGOs, priorities in disability related policies. Representatives of The Netherlands, Spain, Poland, Slovakia and Romania attended the event.

Gentle teaching A seminar on new means of gentle teaching for persons with severe disabilities took place in Zagreb, Croatia, organized by Open Society’s Mental Health Initiative. The seminar was hosted by the Association for the Promotion of Inclusion and addressed to the service providers in Central and Eastern Europe. Pentru Voi was represented by psychologists, pedagogues, and the chief of the residential services.

Good practice examples The conference was organized by International Labor Organization in Sofia, in November. Its aim was to present the good practice examples in the field of the social services provided to children and adults with intellectual disabilities, in order to establish such services in Bulgaria too. Representatives of the Bulgarian Governmental Bodies, in charge with reforming the social services, were present in the event. Pentru Voi was presented by this occasion among the five good practice examples from Europe. Laila Onu described the service provided and the projects we implement. One of the challenges of the seminar is to find ways to multiply these examples and to replicate them in Hungary.

Social enterprise Open Society’s Mental Health Initiative finances a training program for the NGOS in Central and Eastern Europe in developing and implementing the concept of social enterprise. A social enterprise has a lucrative purpose with social aims – the profit is invested in the benefit of the recipients of social services. The bakery – a workshop in Pentru Voi day center – activates as social enterprise. Its main aim is not to maximize the profits, but to achieve a social mission (in our case, to ensure working opportunities for persons with intellectual disabilities). Of course, there is a commercial side (to produce and sell bread and crescent rolls), which is important, but, for Pentru Voi, greater importance has the accomplishment of the social mission. As a result of two training sessions (in Timisoara) we made a feasibility study. Based o nit, after a training in Budapest, we drafted a business plan. The trainers came from NESsT – Non-profit Enterprise and Self-sustainability Team (an NGO based in USA, providing training in USA, Latin America, central and Eastern Europe). 23

European Commission on Disability „Equal chances for persons with disabilities – co-operation and partnership” A Conference on equal opportunities for people with disabilities took place on 9-11 December 2004 in Bulgaria. As the European Commission finalised enlargement negotiations with Bulgaria and Romania and set out plans to start accession negotiations with Turkey and Croatia, this event brought together participants from these 4 countries. The aim was to allow them to discuss issues of common concern in the area of disability, together this participants from the EU, and to share experience and exchange best practice concerning disability in the area of employment and social policy. The conference was organised by the Commission, in cooperation with the Bulgarian Ministry for Labor and Social Policy. Through this conference, the Commission sought to raise awareness of disability issues and demonstrate its commitment to supporting the process of EU enlargement in the candidate countries. An important theme of the event was the need for action through dialogue and a stronger civil society. Mrs Odile Quintin, the Commission Director-General for Employment, Social Affairs and Equal Opportunities, presented the EU social model and its approach to disability, highlighting the importance of a rights-based approach to people with disabilities and outlining the range of EU activities in the area. Mrs Christina Christova, the Bulgarian Minister for Labor and Social Policy, outlined the Bulgarian disability strategy and the thrust of recent measures in Bulgaria. Mr Krassimir Petrov Kotzev, President of the Union of People with Disabilities in Bulgaria, presented the views of his organisation on EU enlargement and its consequences for people with disabilities in the acceding countries. Mr Enis Yeter, Turkish Under-Secretary in the Ministry of Labor and Social Security, spoke about the recent developments in his country. From Timişoara Mr. Zoltan Szoverdfi attended the event.

Plan 2005 For 2005, we have three priorities: 1. Developing the services provided and dividing them: employment center and activities center. In order to do this we will build a new center, especially designed for those with severe disabilities. We hope that, by the end of 2005, we’ll be able to move 40 service users with severe disabilities, autism and challenging behaviour in the new building. They will benefit of professional care, in four activity groups, according to their individual programs, aiming at developing their self-help, social and communication abilities. We will also make individual therapy programs, according to each person’s needs. In the present building we’ll have four workshops: copy center, tailoring and handicraft, candles making & maintenance and work-based-on-contract. The other two workshops – 24

garden and bakery – will keep the same location - Bacalbaşa street and Săcălaz. We are able to start the works for the new building thanks to the success of the Dutch fund raising campaign from 2004. We’ll raise the rest of the money by organizing a similar campaign in Timisoara.. 2. Diversifying the residential services by developing a social housing network for persons with intellectual disabilities. This is a very new concept for Romania, being the last step towards independency. We will support five persons coming from institutions, which used to benefit of our residential services during the last years. At present they all have a job and gathered the skills needed for independent living. Independent living is the next step towards inclusion, once the protected housing stage (group homes DINA, DINU) is over passed. During one year the foundation will financially support the whole rent for the apartments where they will live, while the rest of the costs related to independent life will be covered by the service users. By the end of 2005 they will be completely on their own feet 3. Creating a respite care centre –for our service users with challenging behavior, located in DINU house (down strairs), in Sacalaz. We will provide temporary housing services for maximum 3 service users at a time, in crisis situations, at the family’s request. The target is service users with challenging behavior and autism. This center would be a premiere for Romania, and the service users need well trained staff in order to notice improvements in their behavior. This is why we will continue the training programs with the professionals from Cambridge University, UK. Ideal would be to have a crisis center specially designed for them, but, for the moment, the only possibility we have in order to answer these service users’ families requests –which are almost desperate - is Sacalaz. We will continue loisir activities: Pentru Voi Club – on monthly basis and we plan to make a partnership with a youth organization, in order to organize together social events. We will continue and develop the social accompaniment, family counselling and family support (even financial support for those in need) programs. As resource center of Inclusion from Romania we will organize four training seminars for the public and/or private service providers and a national conference in August 2005. In the frame of the Model Site project we’ll have two training modules for five Romanian NGOs. We will publish four issues of the magazine and a manual on independent living. In co-operation with other NGOs in the field, we will try to convince the new Government about the need of radical changes in the field and we are willing to get involved in drafting it.

Laila Onu Director

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INCOME 2004 EURO

7500

3841 Other 15921

9375

PMAG

Tranzition to adulthood

5645

Study 9677

5816

Round table

Model Site 11702 18387

Capacity building

2567 Learn to listen

ANPH

Friends of Speranta

Total income 90431 Euro

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Structure of donors 2004 (EURO)

500

7500

1341 SHIA Sweden

500 1500 27623

Open Society Institute

9375

ANPH

Arnhem school

Lions Club Albi France

Highschool Toulouse Lautrec d'Albi France

42092

Friends of Speranta

Various other sponsors

Total income 90431 Euro

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COSTS 2004 EURO

4211 1100 Other 9375 21583

5639

PMAG

Tranzition to adulthood Study

3614

Round table 9677

Model Site

18387 Capacity building 7858 2567 Learn to listen

ANPH

Friends of Speranta

Total Expenses 84011 Euro

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Donors and Partners They have supported us and we are thanking them!!

Donors • • • • • • • • •

Town hall Timişoara (Local Council) National Authority for Persons with Handicap Open Society Mental Health Initiative Friends of Speranta Foundation, The Netherlands Co-operating Netherlands Foundations for Central and Eastern Europe SHIA, Sweden WACR, The Netherlands Rotary Elst, Rotary Timişoara and Rotary International Foundation Ministry of Labor and Social Solidarity

Partners • • • • • • • • • • • • • •

Social Work Directorate, Timiş and County Council Timiş Prefecture Timiş The Delegation of the European Commission in Bucharest Royal Netherlands Embassy in Bucharest Inclusion from Romania Inclusion Europe Inclusion International European Disability Forum European Commission – DG Enlargement, Social Affairs and Employment Council of Europe European Parliament Teleuniversitatea Timişoara Mass-media representatives from Timisoara Other NGOs from Timişoara, Romania, Central and Eastern Europe

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This report has been printed by persons with intellectual disabilities, in the copy-center „Pentru Voi” Foundation, Timişoara, Romania.

Tel.0256 – 22 80 62; Fax. 0256 - 22 84 73 E-mail: p e n t r u v o i @ p e n t r u v o i . r o Web: w w w . p e n t r u v o i . r o