My name is Bridget Cooper and between 2011 and 2015, I shared my house in Bulgaria with eight women with a mild learning disability. I lived on the third floor and the municipality rented the fully furnished two lower floors for a symbolic rent, to be used as ‘zashtiteno jilishte’ (protected house). This service is defined by government guidelines as a part of Bulgaria’s deinstitutionalisation process (described as a service integrated in the community, in line with the social model of care). It was managed by a local non-governmental organisation (NGO), and supervised by the local municipality.
The protected house had a shaky start, with four different managers changing over a period of 15 months. They were followed by a well-qualified manager, who began implement the guidelines in a way that was respectful of the women living there. This resulted in them developing new skills, making plans and choices on a daily basis and beginning to take control of their lives. It was helped by a high staff ratio (5 staff to 8 women), volunteer activity, a welcoming village community and externally sourced sponsor money, which allowed the women to take part in a range of activities. These included candle making, a village yoga group, a zumba dance class, beach and town walks, managing a vegetable garden, using village shops on a daily basis, meetings with friends from Varna, attending church events, village events, concerts, joining clubs, taking a weaving course, making contacts with old friends and family. Most features of the service were in line with the guidelines for a protected house.
However, in November 2013, the managing NGO began undermining the work of the manager. All his efforts to bring a sense of normality to the house were blocked by the managing NGO which took the side of the resistant staff members. Eventually, the manager was replaced by a person known to the NGO, who had no understanding of deinstitutionalisation. As a result, there were many areas where government guidelines were ignored and/or acted against, with the medical model used to run the service. Over the last year, I have witnessed a number of negative changes, which were also noticed and remarked on by the local community. These include:
- The women being locked inside the property (which includes the house and a yard) for 15 hours a day by the staff who are only present during the ‘business hours’. This has allowed a culture of bullying to develop, with one of the residents taking control of the personal care of others, making decisions when the others will go to bed (usually very early), when they will get up (always at daybreak), what clothes they will wear etc. As a result, the weaker women have been traumatised in the mornings, and have often been crying and screaming;
- Neglect of the women’s personal care, including shoes falling apart, grossly overgrown toe nails, untreated corns, in growing toe nails, athletes foot, lack of toothbrushes and soap, and restricted access to toilet paper (with one roll issued at a time from a locked store and no staff on site to replace it if it runs out);
- Neglect of the living environment, including dirty bathrooms, light bulbs not being replaced, mould on the bedroom and kitchen walls;
- Restriction of social contacts, activities and exclusion of volunteers;
- One woman’s application for registration to continue her formal education has been blocked.
Until May 2014, I was still able to make an official complaint on behalf of the women. I have contacted both municipal and regional social services and provided evidence of the problems in the home. Unfortunately, the local inspectors who came to visit the service said that everything was in order. As a result of the complaints, however, the entire service, including the management, residents and staff, have been moved to a house in a more isolated village, where there will be no one to witness how the women are being treated and to advocate for them.
Any of the following changes at the levels of staffing and management bodies might improve the situation of the eight women:
- Quality control by a nationally approved and trained inspectorate with legal backing of the Ministry and enforcement powers;
- Ensuring that inspectors are independent of the service provider or any other influence, in order to prevent conflict of interest;
- Agreed quality standards, indicators of good practice, policies on safeguarding of vulnerable adults;
- Sharing of examples of good practice;
- Nationally recognized training body/qualification on deinstitutionalisation;
- Additional options for adults with disabilities to live in the community, other than protected houses.
I have found myself powerless to help these women. I am convinced their treatment goes against the UN Convention on the Rights of Persons with Disabilities, ratified by Bulgaria in 2012. I would therefore like to see the Bulgarian Government taking urgent measures to ensure that they are able to have choice and control about how they live their lives, to be able to take part in meaningful activities, to have their privacy respected and to live in dignity.
On 27 April, ENIL will meet with the European Commission officials from DG Employment and DG Regional Policy, in order to highlight concerns raised by Bridget. Considering that Bulgaria is expected to invest large sums of EU funding into infrastructure and services for adults with disabilities in 2014 – 2020, it is important that the systemic changes suggested by Bridget are implemented before any funding is spent. If not, it is likely that EU funding will go towards services similar to this one, thus denying disabled people their human rights.
Photo: One of the women living in the house struggling to see outside the walls by climbing on blocks of wood. Despite being very social, her previous freedom to get out into the community and interact with her neighbours was severely restricted.