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"When we started I had no idea about inclusive education or mainstreaming. I knew nothing about other groups of parents; nothing about the whole philosophy of inclusion. The word "Inclusion" did not exist for us; very few people spoke about mainstreaming - it was a completely new concept for us."
"We decided to set up an organisation called "Speranta", which means, 'Hope', to fight together for a better life for our children!"
Under the communist regime, it was illegal to set up any organisation for children or adults with learning disabilities. Only two disability organisations, for blind and deaf people were supported by the government. So, it was only in April 1990, after the fall of the communist state, that a group of 25 parents came together in Timisoara, set up a committee and organised an open meeting for parents of children with mental disabilities. 40 parents attended. We shared our worries about our children and their future. We decided to set up an organisation called "Speranta", which means, 'Hope', to fight together for a better life for our children!
It was very difficult to get financial support for the organisation. We contacted parent groups in other countries: Holland, England, Austria, and FUB in Sweden. In 1991 Speranta joined Inclusion International, the international organisation for people with learning disabilities. The Swedish parents' organisation, FUB, agreed to fund a special education centre in Timisoara.
This strategy of finding resources from outside has been crucially important to us from the start. We needed support of all kinds, not only funding and materials but also access to wider information and knowledge than was available here in Romania.
When we started I had no idea about inclusive education or mainstreaming. I knew nothing about other groups of parents; nothing about the whole philosophy of inclusion. The word "Inclusion" did not exist for us; very few people spoke about mainstreaming - it was a completely new concept for us.
We developed a deliberate strategy of using our foreign partners to put pressure on the government here. Romania wanted to join the European Union and wanted to meet the European standard, so we told them that if they wanted to meet the standard they also had to do something for citizens with learning disabilities.
Our main purpose is to improve the quality of life of people with mental handicap and their families. We are working towards a society for all. In order to achieve this goal we:
Membership: Only parents of children with a registered disability of mental handicap are eligible to join Speranta. We decided against including adults with mental illness who wanted to join the organisation.
Meetings: At the start we arranged monthly meetings for parents, until the parents asked for weekly meetings. Parents also suggested setting up clubs relating to specific conditions such as a club for parents of autistic children, another for parents of children with Down syndrome, another for children with epilepsy. The meetings are held in the afternoons after work so that both mothers and fathers can come. The most important thing for parents is the opportunity to speak to other parents and learn through sharing their experiences.
The meetings are held in the afternoons after work so that both mothers and fathers can come.
When problems in relation to schools are raised, people from the school inspectorate are invited to discuss the issues. Lots of parents are very angry because their children are rejected by the schools, especially by mainstream schools.
Children with severe handicap are still rejected by special schools and have no legal right to education. Day centres exist in some places but not throughout the country and not in a number of cities. There are lots of children still at home.
The projects we have set up have been based on needs expressed by parents and families and on the needs of the disabled children themselves.
We created the rehabilitation centre to prepare children for integration into ordinary schools. One of the problems is that teachers in mainstream schools reject our children and say, ' Well, I'm sorry but your child doesn't fit into the class. He's different isn't he? He doesn't meet the school requirements!
We always had a foreign partner and then developed partnership with government. From the very beginning we started a dialogue with the authorities, both the local and state departments."
Our first priority was to create a centre for children with severe disabilities because these were the children who were rejected by everyone, even by special schools. They stayed at home all the time and that was very difficult for parents who had to care for their child for 24 hours a day.
This project aims to reach 100 parents in order to:
Each Friday there is a meeting for 25 parents. The parents meet professionals eg. psychologists, occupational therapists, doctors, lawyers or local authority personnel. Parents have the opportunity to discuss their child's problems and potential with the professionals and also with other parents. Meantime, in another room, their children can dance and play together, meet other children and learn to have fun. Each month a trip to the countryside is organised for families with a child with mental handicap.
This project aims to support 40 families with mentally handicapped children with a very low income (an income that is too low for minimum survival needs), to increase the families' knowledge and acceptance of their disabled child and to support the families to claim and benefit from their legal rights.
A social worker makes regular visits to the families in order to assess their needs and to offer some training. 20 families were found a twinning partner in Winterswyk, in the Netherlands. The Dutch twinning partner sends clothes, shoes and food to help support the poor Romanian family. Some of the Dutch families have been to Timisoara to visit their "twin" family and they were able to establish good personal relationships. All 40 families are supported with food twice a year, thanks to a donation from two Dutch people. Families with children in school also receive school equipment.
All the children and young people in Speranta's projects, family members in the oorganisation and staff working with persons with mental handicap are eligible to use the centre which is situated in the mountains. The centre was planned to accommodate 32 people with additional facilities for training and leisure activities.
Training programmes are organised for 6 families and some professionals. The training programmes last a week, and include information-giving and discussion. They also provide an opportunity for professionals to observe interactions between parents and children and to use these to develop rehabilitation programmes for the children and counselling programmes for parents.
Parents of many young children did not want their children in special schools; they wanted their children to be able to attend mainstream schools. The purpose of the special education centre was to provide support to children with disabilities in mainstream schools. From the start we worked with very young children from 3 years of age to stimulate their development.
We hoped that with this special help, integration would be easier. One of the problems is that teachers in the ordinary schools reject the children and say, 'Well, I'm sorry, but your child doesn't fit into the class. He is different, isn't he? He doesn't meet the school requirements.' So this is why we created the centre.
We planned the centre in collaboration with the Ministry of Education. We outlined a protocol; the government provided a building and Speranta undertook to create a special fund to finance staffing. Sweden provided funding for 3 years. The Ministry of Education has agreed to take over the centre's running costs after this.
165 children now attend the centre which has 30 professional and rehabilitation staff. These include physiotherapists, occupational therapists, speech and language therapists and psychologists a parent counsellor and a child neurologist.
The main purpose of the centre is to support the education of children with special educational needs in mainstream schools. In particular, it targets children with developmental disabilities including mental retardation, autism, cerebral palsy, learning difficulties and epilepsy. It offers support to the children and also to their families. Some of the services are offered in the families' homes and they include:
The parent counsellor has set up a club for parents and plans to start another club for grandparents who have a very important role in Romania. Future plans for the centre include setting up services in inclusive schools and to extend counselling services also for teachers in inclusive schools.
Our work has developed in response to members' changing needs, as their children have grown older. But older parents would come to us and say,
"OK, you are doing all this for children, but my child is 20. He was always rejected - there was never anything for young people. So what are you planning for them?"
The day centre for adults was therefore set up at the request of parents. We again started by seeking foreign support and this project is supported by Holland. Both the Education Centre and the Adult Day Centre are run as a public-private partnership between Speranta and the Ministry for Education. The centre has places for 50 young people with mental handicap.
The goals of the centre include:
The centre is divided into 4 groups of 8-10 young adults. The young people work in 4 different workshops to learn vocational skills, selected through a process of individual assessment. Additional support is provided by a team of professionals, psychologist, occupational and physiotherapists etc. A social worker is employed to find jobs in the community for adults who are able to work outside the centre with or without support.
Trained staff support a further 10 young people with challenging behaviour at home and develop individual programmes for them to integrate them on a step-by-step basis into the day centre.
An EENET member met with a group of parent members of Speranta and tape-recorded their discussion. This story has been written using the transcription of the tape and some Speranta publications.
Speranta
Str Fagului Nr 17
Timisoara 1900
Romania
Fax: +401 252 5750
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05/06/2001