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"The origins of the association had education as its core focus."
"Those of us who favour mainstream schooling do so because we believe that this offers our child a better chance of improving, both socially and academically".
"We feel that because of the combination of our cultural background and our children's disabilities, the children need a far greater level of help and attention from specialist professionals"
One of the founding fathers of Apasenth explained:
"In 1984, my son who had severe learning disabilities attended a local special school. I became very dissatisfied with my son's lack of progress. He could not speak, could not dress himself, lacked most basic skills. I decided to try to get together with a few other parents with disabled children at the same local school. 4-5 parents began to meet on a regular basis to discuss our difficulties and try to plan how best to help our children learn".
So the origins of the association had education as its core focus. We met every Wednesday to:
After some time the local authority allocated a social worker from Tower Hamlet's social services who began to support us and put us in touch with a toy library. We invited other professionals in to speak to us; we arranged seminars where we could learn new information and skills. The social worker also advised us and supported our application to become a registered charity.
Initially, we funded ourselves through modest subscriptions so that we could rent a meeting place. Later, again with the support of the social worker, we were allocated a room in a community centre by the local authority. Gradually, we managed to get additional funding through the local authority and through a number of charitable trusts. So we were able to set up a number of services ourselves, and these have continued to grow and expand.
We want to improve the quality of life of, and to empower, the families and young disabled adults - especially in terms of health and education.
We aim to provide information, advice, advocacy, counselling and other services to Asian parents and carers, and in particular to Bangladeshi children and young people with learning disabilities.
Gradually, over the years we have developed the following services and activities:
Not only was Apasenth started because of concerns that parents had about the education of our disabled children, but nearly all our activities have an educational focus. Our parents have high expectations of education and are discouraged by the lack, or very slow rate, of progress of our children. We feel that because of the combination of our cultural background and their disabilities, our children need a far greater level of attention and therapeutic input than they currently receive from specialist professionals such as physio/ speech/ occupational therapists, and sign language teachers. Some of us feel that our children do not make progress because they have too little help.
We appreciate the work of the SEN Development Worker in helping parents to voice our concerns and communicate with our children's teachers and other education personnel. Our representatives such as the chair of the Executive Committee and others have protested to the local education committee about the reduction of working time of the SEN development worker and the withdrawal of her services for children attending mainstream schools but without success.
Apasenth as an organisation supports inclusion in its broadest sense; inclusion in the community; inclusion in employment and in education. In practical terms at the current time, however, there are differing views among our members.
Some of us completely oppose special schooling because we fear the stigma, especially if our child attends a school for children with learning difficulties. Some parents have difficulty in recognizing that their child has a disability because there are no visible or obvious signs as with severe learning or physical disability.
Those of us who favour mainstream schooling do so because we believe that this offers our child a better chance of improving, both socially and academically. We think that the "special" institutional setting maintains learning disability or even makes it worse because the other children offer no positive role models and no challenge to improve. Instead of increasing our children's confidence in their ability to learn they are more likely to have only limited expectations of themselves.
However, one or two parents voiced the strongest concerns also about the implications of mainstream schooling for their children.
"If we are worried about the lack of attention our children get in special school what will happen when they go into mainstream school? Their needs will receive less attention; they will have less access to the various therapies."
Those of us in Apasenth who prefer special to mainstream school do so because we think our children are safer in smaller classes and a more protected environment. Students are not allowed out at lunch times; they are brought to school by special bus. Even the fact that the boys are immature is regarded by some parents as positive as they do not fear any sexual overtures to their daughters.
Others do not agree. They prefer mainstream school for their children because they feel this promotes inclusion into the community. Many boys and girls who have a statement of S.E.N. but remain in mainstream school go on to further education college and have the choice of a variety of courses. Some gain qualifications and, eventually, employment.
Special school pupils may also go on to college. Boys are more likely to gain some employment eg in catering or as machinists. They are often married at an early age. Girls may also attend college or the Apasenth Day Centre but so far none have gained employment. Some are married, usually by being taken back to Bangladesh.
Overall, our parents' views mirror the split in placement of their children, half in special, half in mainstream education.
A group of young people in the Day Centre were asked for their views of the facilities they attended. Most attended the day centre each day but one or two also attended a college of further education for two days each week. It was mainly the girls who were involved in the discussion.
They said that they enjoyed some of the activities such as cooking and the trips out. They enjoyed being with others.
One girl who attended further education expressed a preference for the college activities and the friends she had there. One of the boys also expressed ambivalent feelings about the centre.
They liked their teacher and the volunteer who came to help. They missed her when she was not there.
Apart from concern about the slow pace of our children's development and learning, we deal mainly with practical difficulties such as transport, the handling of behaviour difficulties and communication difficulties. Here are some of the difficulties with which parents have asked Apasenth for help:
The main strength of Apasenth lies in the commitment of our parents and, since their appointment, also of its workers. The strategies that we have adopted have been mainly to provide services that we felt the families of disabled children and adults needed but which were not being provided by other agencies. We have done so by:
Currently, some of the areas which we are developing include:
| 1984 | Apasenth founded by a small group of parents |
| 1987 | Registered as an association |
| 1989 | Project Coordinator appointed |
| 1991 | Administrative worker appointed |
| 1992 | Special Educational Needs Development Worker appointed by Local Education Authority and based in Apasenth |
| Consultant funded to train Apasenth management group | |
| 1993 | Life-skills project for girls set up |
| 1998 | Life-skills project for boys set up |
| 1999 | Summer play scheme set up |
Tower Hamlets is a part of East London in which the majority of residents come from Asia, particularly from Bangladesh. Many people, especially women, speak Sylheti-Bengali. The population is mainly Muslim.
Education legislation covers all children and education is compulsory from ages 5-16 years. Disabled children are entitled to education from 2 -19 years. State provided education is free. A National Curriculum exists and disabled children can be included but may be offered alternative programmes where appropriate. When there are concerns about a child's educational progress parents have a right to request an assessment of their child's educational needs. Where marked additional needs exist, a Statement of special educational needs is drawn up to specify and, at least in theory, safeguard any additional provision that is required.
A range of educational settings exist: separate special schools especially for children with severe and profound learning difficulties; resource (mainstream) schools with special access and other facilities for physically and sensory-impaired children and mainstream schools without additional facilities. There are also facilities in schools for additional teaching staff and/or classroom assistants to help meet the needs of pupils with special educational needs. Children are sometimes transferred from mainstream to special schools and also from special to mainstream schools.
Tower Hamlets has 6 special schools, including both primary and secondary schools. Approximately 50% of the disabled Asian children attend mainstream schools and 50% attend special schools. A Special Education Needs Coordinator exists in all mainstream schools. Each of the special schools employs a home/school liaison officer.
The SEN Development Worker, now based in Apasenth, was originally employed full-time to work with Bangladeshi children with special educational needs in both mainstream and special school settings but has recently been made part time and the focus is now restricted to work with the special school sector.
This account is based on a discussion held by the EENET consultant to Family Action for Inclusion with Apasenth workers, parent members and disabled young people, and on additional documentation of the work of the association.
Apasenth
The Brady Centre
192-196 Hanbury Street
London E1
5HU
UK
Fax: +44 (0)20 7377 0450
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04/06/2001