Homes of horror

In the first of two reports on homes for adults and children with learning difficulties, Karen Simpson, Mary Myers and Irene McKnight talk of their experience in trying to improve services.   

In April this year, Amnesty International went to Bulgaria to offer training for staff in two social care homes. One home was for 160 men with learning difficulties and the other for 50 children with learning difficulties. The team included three clinicians with long experience in learning difficulties and autism, from the Disabilities Trust and the Hesley Group.

The isolation, desolation and meaninglessness of human lives in the homes were terrible. The living conditions were appalling. The staff lack skills, were inadequate in number and nothing was expected of them but warehousing of the residents, who have nothing to do, in areas far from society.

The children’s home was in a remote village hundreds of miles from the children’s families, who cannot afford to travel to visit. It housed 12 children who were mobile and 32 children in cots, who rarely if ever left them. The children in cots spend their lives horizontal, in which position they were fed liquidised food. One such little girl with severe spina bifida interacted with us to raise the question how “mentally retarded” she actually was. The hygiene arrangements were dire, one children’s toilet was never used and another smelly bare room had only a line of potties in it. Bathing is weekly in one stone sink or a shower. The general basic cleanliness of the children’s mouths, ears and between their fingers was poor.

There was an extremely cold room full of newly donated sensory equipment, which had never been used, and bare electrical sockets hung from the walls. We had taken a small selection of balls and toys and the children had a joyful time with them, then the staff shyly started to join in with them.

The staff were caring but lacked any knowledge of child development or needs. There was much concern about Ana, a very small girl of 13, who had a diagnosis of schizophrenia and who hit her head with her hands unless they were held or tied up to her bed. She was on large doses of haloperidol (an anti-psychotic drug that can produce unpleasant and serious side effects). She in fact presented with a classic picture of severe autism. Indeed, we saw many children with obvious autism, but this is a condition almost totally unrecognised in Bulgaria.

We were asked to advise on Ana’s management. A simple exercise that included all staff, recorded on a flip chart what was known about Ana and illuminated the many situations in which she does not self-injure. The staff, shy at first became enthusiastic in offering some creative ideas for managing her condition. It was depressing to recognise that staffing levels and supports were unlikely to take forward such thinking.

This home, not as appalling as some previously visited, took us back to the 1960s in the UK. It illustrated the problems facing Bulgaria. Children with developmental difficulties are labelled as “mentally retarded” which closes the door on their social status and any future life. There are almost no community services and supports to enable them to live and develop within their localities and families, who are usually impoverished and often Roma, considered the lowest of the social hierarchy. Eastern Europe is still very stratified and disabled people or people with mental health problems are excluded from society.

These children will all proceed in time to adult “homes”, and having already seen the future life there and their extreme vulnerability, we could not but wonder if they would not be better off dead.

– The team’s experiences with training in adult residential care will be featured in two weeks’ time.

Karen Simpson is unit manager of the Disabilities Trust residential centre, Dysons Wood, Reading; Mary Myers is consultant psychiatrist to the Disabilities Trust; and Irene McKnight is deputy head of support services, Wilsic Hall school, Hesley Group.