Disability World
A bimonthly web-zine of international disability news and views, Issue no. 7 March-April 2001

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Situation of Disabled Romanians Reported to European Parliament Group

Report provided by Jerome Mindes (jerrymindes@juno.com)

Main discussion - Disabled People in Central and Eastern Europe
Richard Howitt MEP welcomed two special key speakers from Romania who would give information about the situation faced by disabled people in their country, beginning with Liala Onu, Romanian National League of Organisations of Persons with Mental Handicap.

Mme Onu thanked the Disability Intergroup of the European Parliament on behalf of people with intellectual disabilities from Romania and expressed our gratitude to the European Union for the support that Romania have received from all the members' countries. It was also thanks to a financing of the European Commission through a Human Rights project run by Inclusion Europe that both Laila Onu and Gianina Gendelon could attend the meeting.

Following widespread news reports of the horrors of Ceausescu-era institutions, EU governments and non-governmental organizations had sent emergency aid to Romania and started projects for improving the condition of people with intellectual disabilities. Romania was deeply moved by this generosity.

Laila was there to represent here the National parents organization from Romania, who is a member of Inclusion Europe, the European Association of Societies of People with Intellectual Disability and their families. Laila explained that she worked as director of Foundation "Pentru Voi" Timisoara, a foundation which provided services for people with intellectual disability.

Laila explained that people with intellectual disabilities were among the most vulnerable to degrading treatment, discrimination and abuse. In all Eastern and Central Europe, there are hundred of thousands of children and adults in different types of institutions (psychiatric institutions, orphanages, and long-term residences) which stunt physical, intellectual and emotional development. Numerous others are effectively stranded in private homes with overburdened family members, excluded needlessly from participation in mainstream social life and despite the increasing awareness of the human and economic costs imposed by large closed institutions, the problem is getting worse.

The World Bank reported that "roughly ten years after the fall of the Berlin Wall, the number of children and disabled housed in these institutions in Eastern and Central Europe is rising." According to the Bank, "more children and the disabled [both physical and mental] live in institutions than before the economic transition." And the overall quality of care for children and the disabled under residential care is "worse today than it was 10 years ago."

Laila introduced to the Intergroup Gianina Gendelon, one of the organisation's service users who had spent the first 23 years of her life in different institutions. Since June 1999 she was one of the beneficiaries of a new project of our Foundation, a project called DINA (De- institutionalisation, Integration, Normalization, Actual).

Gianina Gendelon's Story of life in a disability Institution in Romania - an Romanian person with intellectual disabilities
Gianina said she was 24-years-old and when she was little she was in an orphanage in Sinersig village. She stayed there till she was 7-years-old. After this period, she stayed in another orphanage in Caransebes. Gianina said she was very sad and Gianina said she cried a lot because she knew that she would be beaten there. Some girls forced her and other orphans to beg, to steal clothes and if we didn't agree they were beaten. They did not have enough food to eat. The other girls beaten Gianina and younger orphans and stolen their clothes. They had to hide their new clothes under the bed mattress.

When Gianina was 11 she went to the Municipal Council from Caransebes. After completing 8 classes, they send Gianina to Lugoj. There it was better. Gianina stayed at Lugoj until she was 22. There she helped the cook but even here, some girls took Gianina's clothes, fruits, pens that Gianina received on holidays. At Lugoj Gianina learned to cut hair.

Gianina was sent to Gavojdia at 23. Gianina stayed downstairs which was better because persons living upstairs were locked in, beaten and they received many pills. Also at 1, 2 and 3 floors they were stealing food from each other because they had less food then Gianina and her friends.

Gianina stayed at Gavojdia and worked for different persons from village (at hoeing, at harvest corn, tomatoes, peppers) and they gave Gianina food and some money. Also Gianina cut people's hair from Gavojdia. After this, Mrs. Laila came with some persons from Holland and they chose 4 girls to go to Timisoara. In Timisoara Gianina cooked for herself, went in the city, received money to buy some things.

At DINA, Gianina can have a home, they have to clean it; Gianina has her own room, her things and nobody can steal them. Gianina can eat what she wants because they have a kitchen, and refrigerator and food. Saturday and Sunday Gianina and friends go together to church, downtown, or at confectioner. If she wants, she can go alone downtown or visit friends or family.

Gianina worked in a hair salon for a month but the employer didn't accept Gianina and she had to go. Cristina found another work place for Gianina at a high school where she work as a cleaning woman. Gianina is very grateful that Cristina found a job for her.

Since Gianina came to the day centre, they went every year to a summer camp in the mountains and also spent winter holidays there. Gianina was very pleased in Timisoara and wanted to thank all persons who took care of them.

Laila Onu explained that In Romania, the change of economic and social environment has had a profound impact also on people with disabilities. Following 1989, foreign organisations, Romanian NGOs and the Romanian Government made efforts to improve the dramatic situation, which Romania had inherited.

There had been major legislation changes with a positive impact to persons with disabilies (Law nr. 53 from 1992 and Emergency Ordinance from 1999). Romania was one of the few countries in the East where people with a severe or profound disability have the legal right to have a "personal assistant". But the legislation is more concentrated in according facilities (allowance, free public transportation, discounts for telephone bills etc) and not in providing equal opportunities. This is why it is considered necessary to improve the legislation, maybe to promote a new law based on the UN Standard Rules, with an anti-discriminatory approach.

A recent Government Decision had established that the personal assistant of a disabled person has to be younger than 50 years old. The National League of Organisations for Persons with Mental handicap had protested against this age discrimination.

The Education Law from 1994 guaranteed the right to education for all children
An Order from the Minister of Education from 1999 encouraged the mainstreaming of children with disabilities in ordinary schools. But the financial resources to provide the necessary support for the mainstreaming. Also, because of not enough resources and lack of accessibility of the special schools, the majority of children with severe and profound intellectual disability are at home or in institutions and their right to education is denied. Some good pilot projects of mainstreaming children with disabilities had been implemented, but this was just a beginning and the majority of children with a mild or moderate intellectual disability have been segregated in special schools which condemns them to a life of inferior opportunity. There were 48,800 pupils in special schools and only 3,499 pupils mainstreamed.

In spite of support coming from international community, Romanian State and Romanian and foreigner non-governmental organisations, the quality of life for institutionalised persons with disabilities is still very poor. Also for people with disabilities living at home, the situation is difficult due to the lack of services and a low income. Most of the adults with intellectual disability are at home with no daily activity and no employment available.

Laila Onu explained that unfortunately a lot of support has been wasted because of lack of know-how of some donors. On the other side, the Romanian authorities didn't have a national Strategy in the field of disability. This was the reason for investing huge amounts of money in institutions with no reform plan and with very small results.

For example, Laila explained that in an institution with 300 children and adults with intellectual disability living in huge rooms with no personal belongings, no wardrobes, no private clothing, a foreign group wanted to provide support and they were asked by the management of that institution for a computerized EEG machine which they have bought for 30,000 US$! With that amount of money, a lot of good things could be done for improving the quality of residents.

Laila explained that, today different governmental departments covered the assistance for people with disabilities: State Secretary for Persons with Handicap (SSPH), The National Agency for the Protection of Child's Right, Ministry of Health, Ministry of National Education. Persons with disabilities are institutionalised in institutions belonging to all of these ministries. However, no accurate data existed regarding the total number of disabled persons in Romania because those disabled persons who are institutionalised in locations belonging to the Ministry of Health do not have expert commission certificates and they are not registered at SSPH.

Currently the major issue related to the transfer of responsibility for childcare to the residential special schools, of the "Camin-spital" (hospitals for disabled children), Child Neuropsychiatry Hospitals and dystrophic centres to the National Agency for the Protection of Child's Right. The precise number of children being transferred is not certain, but is thought to be about 42,000 in 248 residential institutions.

In the state institutions there were 22,100 persons with different disabilities institutionalised in the whole country. There were 2000 young persons 18 years or older who were in institutions for children, because they don't have anywhere to go. There are 18,900 adults institutionalised in 114 institutions.

Laila explained that unfortunately, lots of the institutions were like asylums and had a medical approach on handicap and the educational and social issues were being neglected. The institutions don't work with a system of assessing the quality of live of the service users and their human rights are often subject of abuse and neglect.

Institutions were overcrowded, and there are few possibilities for privacy. In the worst cases, the facilities are unsanitary, and the conditions are inhuman and/or degrading. Often institutionalisation worsens retardation, thus increasing the likelihood of continued institutionalisation.

Laila explained that the experience of the last 10 years proved that no matter how much money was invested in institutions, they still provided a low quality of life. This is why de-institutionalisation and preventing institutionalisation was the only reasonable way to improve the situation of people with intellectual disability in Romania.

Laila said it was very important to create a network of support services for independent family life; community based residential services for children and adults with handicap. Advocacy was needed at national level to move government policy towards reliance upon community-based day centres, crisis intervention programs, vocational programs, residential alternatives to long-term institutionalisation, and specialized foster care. Residential facilities/options for the people with intellectual disability are unavailable or are extremely restricted, placing undue burdens on families and/or others unable to provide adequate care, and unnecessarily reinforcing dependency patterns.

A key role in the development of the last years was played by NGOs. NGOs had succeeded in introducing new services with a new approach based on the philosophy of inclusion. The relationship between NGOs and the central government improved significantly following the 1996 election of a government, which openly acknowledged the role of NGOs in Romanian civil society.

There are a few community-based services starting at the initiative of NGOs. The organizations members of the Romanian League of Organizations for Persons with Mental handicap (the national parents organization) have started nine centres: eight for children and one for adults. All of them are public-private partnerships between the State Secretariat for Persons with Handicap, the Ministry of Education, local authorities and NGOs. The idea of public-private partnership is valuable to us because we believe that this is the only way possible to reform the system. These examples of good practice were developed only in some areas of the country, with:
  • The existence of a strong local parents organization
  • Substantial support from foreign organizations, both in know-how and
  • material
  • Good cooperation with local authorities
A good example is the services provided by Foundation Pentru Voi, from Timisoara where Gianina is a service user. The Foundation was established by the parents organization and a Dutch Foundation FESTOG who provided the financial support but also the know how.

Laila said that it was important to design and implement a reform of the whole system of support for people with disabilities, with assistance of the European Union experts. (Maybe a PHARE project).

This reform could aim to: Elaborate an overall social protection policy, effective in providing support to families and preventing institutionalisation of people with disabilities Restructuring of the residential care institutions Strength and diversify services for people with disabilities Define the role of different government agencies and to improve the cooperation between them in the best interest of the persons with disabilities and with respect to their human rights. To design National basic quality care standards for services for people with disability. These standards should be designed in cooperation with NGOs and European experts and they have to be respected by all state and private institutions and services To asses all the institutions and services based on these National quality care standards

Part of this general reform, restructuring of the residential care institutions should aim:
  • To establish the objectives and responsibilities for each institution
  • To establish the criteria for admission in these institutions with respect
  • to the human rights of the persons with disabilities
  • To elaborate a basic quality care standard for each institution
  • To change the management style in these institutions according to the
  • latest trends in international disability policy. The medical approach has to be replaced with a multidisciplinary one, focusing on the improvement of the quality of life of residents.
  • To initiate professional training for personnel in institutions
This programme has to be done by The State Secretariat for Persons with Handicap, The National Agency for the Protection of Child's Right, Ministry of Health and Ministry of Education, together with international experts.

The European Union has established, as a condition for the acceptance of Romania in the EU, the improvement of life of institutionalised children. This has a positive effect, because the Government is very keen to fulfil the demands of the European Union and they are working in the improvement of conditions in institutions for children. Most of the institutions for children have been transferred to the National Agency for Child protection and the Government has approved a strategy of creating small units instead of big institution. The World Bank has special programs for the reform of institutions for children.

Unfortunately, Laila said that as a result, all the resources and attention go to institutions for children and nothing for adults. The Government has decided in June to increase the daily allowance for food for a child in an institution to 1 US$/ day. An adult with learning disability institutionalised has an allowance for food of 60 cents per day! In institutions where are children and adults together, children receive more food or a banana or an extra chocolate. At the same table a child receives an extra food and of course, the adults feel frustrated and some of them steel the extra food from the children! It took us 4 months of lobby until finally from November, the Government has also increased the food allowance for adults.

It is a priority now, for NGOs to continue to lobby to the government to promote the disability issue as a whole and to avoid the concentration of the attention and resources only on children.

The advocacy programs are also priorities for Romania. Community advocacy is almost absent and the same for self-advocacy. Parents and families are the only advocates for the moment, but they need training and support. We have to start to support self-advocates and to train them. Community advocates for children and adults from institutions are also very important for the improvement of the existing situation.

Laila said that one way in which the European Commission can support Romanian disability organisations is by supporting Inclusion Europe, who has the knowledge and its projects in Eastern Europe. The project PMAG run in co-operation with Inclusion International is really essential for Romania now. If the PMAG advocacy compaign will succeed to move the government policy towards community based services and de-institutionalisation programs that would really make a difference in the life of people with intellectual disability. The European Union has a 29 millions EURO Phare project for the reform of the child care system in Romania. The Romanian NGOs have the knowledge and the expertise and we'd like to be part of this reform. Liala said it was a pity that in the last Regular Report from the Commission on Romania's progress towards accession from November 8, there is no mention about disability NGOs and the importance of involving them in the reform process. The last 10 years had proved that organisations of parents and self-advocates are the best promoters of a real change in the disability policy.

Laila gave a quotation from Mr. Bengt Lindquist, the UN Special Reporter on Disability:
"Throughout the centuries we have designed and constructed our societies, as if persons with disabilities did not exist, as if all human beings can see, hear, walk about, understand and react quickly and adequately to signals from the world around them. This illusion, this misconception about human nature, this inability to take the needs of all citizens into account in the development of society, is the main reason for the isolation and exclusion of persons with disabilities."
Laila said it was necessary to change this misconception and to advocate for a new society, which would offer equal opportunities to all her citizens. Romania was building a Mid Term Strategy with the support of the European Union. It is important that this strategy would take into account the needs and the human rights of people with intellectual disabilities.

Nelson Mandela said: " After I climbed one hill, I discovered that there are lots of hills to climb in front of me". Laila said that after 10 years, we have climbed one hill but there are lots of them in front of us. But we have learned how to climb and that was the most difficult part. We hope that we'll be able to climb all the other hills in front of us, together NGOs and government, with the support of the European Union, and to improve the life of persons with intellectual disabilities".

General Discussion
Richard Howitt MEP thanked Laila and Gianina for the very thought provoking presentations and said that the Disability Intergroup shared the sentiments expressed. Richard Howitt invited Astrid Thors in her capacity as President of the Joint Parliamentary Committee on Romania to respond.

Astrid Thors MEP considered the points raised by Laila and Gianina demonstrated the importance the role of the Charter of Fundamental Rights and the Non-Discrimination Directive would have in furthering the rights of disabled people in the enlargement countries. Mme Thors congratulated Liala Onu on the work of the project in Timisoara which was clearly making a direct and positive impact on disabled people in Romania and it was essential to raise awareness of the problems regarding institutions in Romania.

Mme Thors explained that she had recently visited a youth centre in Romania were some of the issues raised in Laila's report were apparent.

The European Commission Central and Eastern Europe programmes such as PHARE and LIEN had provided some assistance to such projects but the money available was not extensive. The work in this area needed closer monitoring to ensure the EU funding was properly directed.

The LIEN programme was being succeeded by a new approach under ACCESS; a new decentralised strategy where the countries concerned would have greater decision making on where the funds were directed. Clearly a significant amount of funding had been directed towards the institutions but the results achieved were not effective and needed to be re-examined. More emphasis needed to be placed on the needs of children and disabled people in Romania.

Astrid Thors MEP was particularly concerned about the winter period in Romania. NGOs working in the field said that there was inadequate food provisions in the country and disabled people were particularly vulnerable to food shortages.

Astrid Thors added that the Romanian Government had recently introduced non-discrimination legislation but this legislation did not include disabled people. The EU had an important role in improving such issues. The problems concerning children in Romania had been given attention but there needed to be greater awareness of the problems concerning disabled adults in Romania too.

Gary Titley MEP was interested to know more about the age discrimination operated by the Romanian Government in relation to provision of personal assistant supported.

Liala Onu said that the state pays for personal assistants for disabled people on the basis of age. This age discrimination creates a lot of problems for families and parents employed as personal assistants. It limits the employment possibilities for parents with disabled children and this age discriminatory approach should be abolished.

Baroness Nicholson, Vice President of the Foreign Affairs and Human Rights Committee, wished to thank the UK NGO MENCAP for their important work in progressing the conditions of persons with intellectual disabilities in Romania. Baroness Nicholson said she would be examining the Romanian progress report in which there had been no recognition of disabled people at all. Baroness Nicholson explained she would be examining this with a view to seeking to incorporate changes to ensure recognition of disability.

Regarding the funding issue, 25 meuro package had been allocated for projects in Romania which did incorporate assistants to disabled people under 18. However, Baroness Nicholson considered that the age condition could be flexible.

The European Commission had provided food aid to Romania and this had had a positive impact however, the food distribution process needed to be more transparent. Baroness Nicholson agreeing with Mme Thors that without such transparency food provision could be abused by the less scrupulous. NGOs on the ground could provide an important means to monitor the situation.

Glenys Kinnock MEP said she endorsed all that had been said there misuse or inappropriate allocation of EU funding in central and eastern Europe could be compared with the situation in developing countries where money had been spent on unnecessary infrastructural projects rather that independent living initatives. Glenys Kinnock said she wished to see more transnational networks which would promote NGO partnerships with Romania and help develop capacity building and civil dialogue.

Richard Howitt MEP said the empowerment of parents of disabled people and the empowerment of self-advocates had often led to conflicts in the EU memberstates and he wished to know if the same conflicts existed in Romania.

Also, the decentralisation of the new funding programme for Central and Eastern Europe ACCESS had created some problems in terms of ensure funding allocation to disability projects and disability NGOs. This needed to be addressed and Richard Howitt asked Liala Onu what approach would she recommend.

Liala Onu said that there is no work to promote self-advocacy in Romania; this whole area was very much in its infancy. Persons with intellectual disabilities had been rejected by society so it was extremely difficult for them to be heard or to have a voice. Work had begun in her NGO to try and support self-advocate groups and promote independent living by finding jobs for disabled people.

It was the case that one of the first obstacles was the attitude of parents of disabled people who were often worried about the level of security of the independent living approach and it was important for NGOs to work with parents to reassure them of the value of independent living and create self support groups for families of disabled people in Romania.

Regarding funding from the PHARE/LIEN programmes, Laila explained that her organisation had been participating in a macro project in partnership with MENCAP UK and the drafting of the National Strategy on the equalisation of opportunities had formed part of this project. The application procedure was managed via the EU delegation in Bucharest.

Laila stressed the need to involve NGOs in the planning and implementation of EU funded programmes in Romania and that the projects funded should support community based services and support the deinstitutionalisation process.

Donald Toolan, of the Centre for Independent Living Ireland, presented information to the Disability Intergroup on a project on training of personal assistants for disabled people by the CIL with NGOs in the Balkans. The project was aimed at promoting independent living of disabled people in the Balkans and promoted the rights based approach of disability in the region. All projects required the direct involvement of persons who had experience oppression to ensure their voice in decision making. It should be remembered that disabled children grow into disabled adults and the needs of disabled adults must not be neglected. Mr Toolan said that the philosophy and principles directing the approach and work of organisations in the disability field must be examined first in any decision of funding allocation. Simply because an organisation had a good economic standing did not mean it was promoting the right approach in disability work or that it recognised the right of disabled people to live independently.

In conclusion
Richard Howitt MEP thanked all the speakers but especially Liala Onu and Gianina Gendelon for coming all the way from Romania to provide the Disability Intergroup with this very important information. Richard considered it was necessary for the Disability Intergroup to follow-up work on this with actions to encourage the European Parliament, European Commission and Council to give greater prioritisation to issues regarding human rights of disabled people in policy and programmes. Also to seek the creation of a special coordinated fund focused on improving the human rights situation of disabled people and to promote capacity building of disability NGOs in Central and Eastern Europe.

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