Start from scratch

In the second of two reports on homes for adults and children with learning difficulties, Karen Simpson, Mary Myers and Irene McKnight report on training staff in one home for men. 

In April this year Amnesty International selected a particular social care home for men with learning difficulties in eastern Bulgaria for a training visit because its director was working hard to improve the filthy institution she took over.

This home was certainly better than most we had seen earlier but the isolation, the physical dereliction and the barren existence of 160 men with learning difficulties without any activity at all remains haunting.

Humans by nature need to be active, but there are thousands of men and women among Bulgaria’s seven million who are detained in hideous conditions, with nothing more to do than watch a TV set high on the wall, day after day, for the whole of their lives.

In this particular home there are not enough seats for everybody so residents fight for space. There is insufficient light and everywhere is overcrowded. There is no privacy, no personal property, beds are close together and, as in most “homes”, the hygiene and sanitation are unspeakable. Adults with cerebral palsy drag themselves around bare floors. There are many with severe autism (a condition barely acknowledged in Bulgaria), for whom the environment is especially hellish. There is an aggressive atmosphere, and we even saw violence provoked by staff in a visit elsewhere.

A number of people with chronic schizophrenia have been added to the learning difficulty population, which meets the need of nobody except hard-pressed health administrators. One appalling institution was closed after Amnesty International’s 2002 report, but the residents were simply dispersed among several other awful places, and they lost that bit of support their friendships provided.

It was noticeable that in all the institutions visited by Amnesty International there was only ever one psychiatric diagnosis – schizophrenia. There was no mention of depression, mood disorders or other psychiatric conditions.

The training we offered staff was simple, and took the three clinicians back 20-30 years to when we first worked to change attitudes. It was fascinating to see Maslow’s hierarchy of human needs in Cyrillic on the flip chart. These “needs” which have been adapted and must be met in order are biological and physiological; safety; belongingness and love; esteem; cognitive; aesthetic; self-actualisation; and transcendence.

The staff asked for some training in managing aggressive behaviour. Two of us with the necessary skills did a practical exercise with staff on “how to stay safe”.

Change has to happen simultaneously at several levels. Bulgaria wishes to join the EU and already political pressures are being exerted about respecting human rights. In the institutions, basic improvements must happen, and there are numerous European charitable bodies providing clothing, sanitation and training to individual homes.

However, it is crucial for central and local government to make the shift to recognise people with learning difficulties as having the same human rights as all other citizens. This will need a big effort and support from experienced services elsewhere to turn back decades of a political culture that despised and rejected “the different”.

– For further information visit www.amnesty.org/library/eng-bgr/index

– Amnesty International has worked with a local non-governmental organisation, the Bulgarian Helsinki Committee, which has been instrumental in furthering the rights of people with learning difficulties in Bulgaria. Visit: www.bghelsinki.org/socialhomes/en/campaign.htm 

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.