A reflection of a volunteer’s experience of Romania’s Disability Services

by Marianne Griffiths, Volunteer, Health Action Overseas

0
1669

I traveled to Romania in September 2009 with an abundance of plans, aspirations and intentions to swap my experience and time for an insight into how this formerly troubled country was now accommodating its most vulnerable citizens. Prior to this, I had worked for eight years in community residential services and family support for people with intellectual disabilities, as well as completing some research in the area in Bolivia. The previous spring, I had made contact with the Irish NGO Health Action Overseas (HAO), and I was impressed by their commitment to working alongside government services in Romania to improve the lives of service users, most of whom had come from institutions and hospitals favoured during the communist regime.

The history of the treatment of people with disabilities in Romania has been coloured by the difficult and brutal actions taken by the government prior to 1989, so I wanted to see how the situation had improved in the past 20 years—whether services had been implemented that had learned from the experiences of service development in western European countries.

Under the communist regime, no social services of any kind were provided by the government—only hospitals and institutions. People with intellectual disabilities and mental health problems, as well as children, were admitted to massive institutions where living conditions were atrocious. Poverty, dramatic social change and a vast increase in population meant it was frequently impossible for families to support their children with disabilities. The Romanian regime collapsed in 1989 following the fall of the iron curtain.

Romania joined the EU in January 2007, although standards of living remain low, particularly in rural areas. There is very little history of training in social sciences, other than psychology. Social work is a relatively new field that has only emerged since 1989 and there seem to be very few universities offering courses in social care work. Similarly intellectual disability nursing does not exist in Romania.

After meeting with Health Action Overseas on several occasions, including a trip to see their services in Romania, I was given the opportunity to spend some time in a community house with eight residents, all with a moderate intellectual disability. My remit was flexible; the idea was to facilitate cross-culture learning—from Ireland to Romania and for me to learn from Romania and bring the knowledge back to Ireland. I hoped particularly to encourage community participation and independent living skills. The community house is staffed and managed by Romanian government services, with a small HAO presence of which I was part. HAO’s role is to support government services, promote and offer direction on ‘best practice’ guidelines and encourage staff to provide the highest level of quality of life to service users.

The house was one of a handful of community residential settings for people with disabilities in the Eastern Romanian city of Galati. The city has a population of 300,000 people and several placement centres, most of which catered for between 40 and 60 people. Most people with intellectual disabilities (and many people living with HIV) in Galati live in such centres which have large dormitories and little privacy, although the basic needs of service users are met. Recruitment in Romania relies almost exclusively on connectivity, political affiliations and nepotism—with a high unemployment rate, it is normal for people to work outside their chosen field of study.

The house (referred to as Galati House) was staffed by twenty people including cooking staff, cleaners, a social worker, an administrator, a manager and several ‘instructors’. None of the government.appointed staff had an education in nursing or social care and the manager, who was the most influential person in the building, was an administrator whose expertise was not in the area of disability. The house had been open for over two years at that time, with all its residents having come from a local institution.

The clients were aged between nineteen and twenty-six and were constantly referred to as ‘children’. One of the reasons for this was the fact that the staff saw themselves in a parenting role to the young people. In what I thought of as the ‘Mama’ model, the young people who had been abandoned and traumatised in their early lives, were viewed as the adopted children of the staff, and many of whom provided them with the love and affection that they badly needed on their first move into the community. This love allowed the young people to develop considerably in the two years that the house had been open; they had learned to eat with cutlery, to express themselves and to attend to simple household jobs.

Staff and management found it very difficult to conceptualise the young people continuing to develop their skills, especially regarding cooking and community integration. Part of this was due to the vast improvement in living conditions between the placement centre the young people had come from and Galati House.

Other reasons included the low expectations around people with disabilities, a lack of education around this issue, a history of hiding people away in institutions and a huge lack of training facilities for skills in the area. In fact. one colleague told me that she feels her neighbours and peers view the job she does as ‘dirty’.

The authoritarian nature of the management structure of Galati House was not conducive to staff or client development. This vertical structure of management appeared to come from the top level of the civil service and was certainly promoted by the Department of Children, to which Galati House managers reported. After living in Romania for a while it started to become clear to me that this was the culture of employment, not only for the area of disability but for Romanian workplaces everywhere. Unfortunately, however, such a culture was not conducive to staff or service-user development and little staff-client advocacy.

Reflections

The experience of three months in Romania affected me greatly. What I struggled most with was the lack of ambition within the culture of the house on behalf of the clients. There was little understanding around issues of self-development or sexuality, and no desire to vary the activities or push the boundaries of their daily lives. Having come from an Irish perspective, where Person-centredness is starting to become the norm, the eight residents of Galati House spent 24 hours of each day together and had few if any individual goals. The culture created by the government services within the house was not conducive to making suggestions or challenge norms. The attitude was predominantly ‘if the children are safe, warm and fed, then our work here is done.’ Speaking to friends both, Romanian and non Romanian, helped me to understand that the difficult history of the country has left its population cautious and somewhat resistant to change which is (naturally) reflected in all areas of Romanian life. This helped me to understand why the service providers were risk.averse and felt that protecting the clients was the most important part of their remit.

One of the most positive aspects of the time spent there was the certainty that the young people were loved by the staff who looked after them. This love certainly had a positive impact on the lives of the service users. Moving onto the next stage of personal development and teaching autonomy and independence remains problematic, however, and many of the staff were constrained by the culture of the unit, as well as their own lack of experience and education in the area of intellectual disability. Hopefully, as the country of Romania develops, quality of life for people with disabilities will improve naturally.

My own experience was hampered by the fact that I spoke very little Romanian and the lack of emphasis on socialising in the culture of Galati meant it was difficult for me to meet people. I constantly struggled with the authoritarian structure of Galati House and what I perceived as the lack of empowerment, not only for the clients but for the staff as well. Any trip outside of the building involved gaining approval from the unit manager and the psychologist. Each of these issues meant that my own remit was difficult to achieve. It simply did not suit the model fostered by the system to encourage maximum independence for its clients—there was no education around this and jobs were at risk.

With these frustrations, it was important that I used the lives of Romanians as my frame of reference, instead of comparing the lives of the young people in Galati to those of service users in Dublin. The average wage in the city was €250, with rent costing up to €200- There are relatively few cafes and bars, no cinema and no public sports facilities. Poverty is a major reason for the lack of socialising, and a very real one. My remit had been purposely kept vague from the start to allow me to use my own initiative as much as possible and this had both positive and negative outcomes. At times I felt that I was wasting everybody’s time including my own, that I was trying to change something that was far far bigger than one small facility. As time went by, though, and I was accepted into the house by the staff and clients, I realised that this was in fact an advantage and that I could use my experiences in Ireland within the Romanian context, even if on a very small scale.

Once I understood this I made the decision to achieve what I perceived as best for the people living in Galati House. I put time and effort into developing working relationships with some of the instructors and spent the funds that had been raised on relaxation equipment, clothes and self-starting activities that we knew would directly benefit the young people. Despite my very basic Romanian, this appeared to work very well and I was warmly welcomed by the staff who worked directly with the young people. Where possible, I included them in decisions that I could make—as a foreigner working for HAO, I had a different position that allowed me to make decisions on how to spend my time and funds that could frequently bypass the bureaucracy and normal routines.

I also chose to spend time doing one-to-one activities with the clients where possible and I did manage to organise trips out, and even a visit from a magician. This worked well and although I remained a little disappointed that the clients were not reaching anything like their full potential, it was a much more satisfying role for me. It also allowed me to engage in a much more positive way with the staff and enjoy the learning exchange that I had hoped to gain from my time there. At all times I was aware of the fact that while my time spent in Galati was an interesting learning experience for me, it was important to be sensitive to the staff with whom I was working alongside, as this was their source of income, they understood the Romanian culture much better than I did, and that they would be there long after I left.

By the time the three months came to a close I had a strong feeling of accomplishment and satisfaction. What I had actually tangibly achieved was difficult to analyse (outside of what had been purchased with the funds I had raised), but the most important part of the experience was bringing a different approach to residents and staff of the Galati House. This was certainly something that added to my personal development and I think to that of each of the people I worked with while I was there too.

Issues Arising in Romania’s Disability Sector

As well as my personal experiences in Romania in 2009, I gained an insight into the future plans for services for people with intellectual disabilities in that country. My experience was somewhat biased in favour of the non-governmental organisation (NGO) sector, both foreign and Romanian, because it appeared to provide better services, be more client.focused and show more initiative around empowering its service users. While the government has expressed a commitment to de.institutionalise the disability sector, this seems to be happening at a very slow pace. A close Romanian friend who had worked for an NGO for the past 15 years explained to me that a lack of funds is not the problem. There are in fact funds available to provide social services, but her view was that the money was being spent to support institutional structures that provide employment for staff, and to maintain the existing bureaucratic system. She explained that a system of ‘maternal assistants’ exists, whereby ordinary Romanians foster children from the institutions and are paid a small fee for taking care of them. This is one part of the system that works quite well.

The most difficult part of what I observed during my time in Romania was the reluctance on the part of the government services to cooperate fully with the NGO sector. Ultimately it is the government that possesses the power to provide sustainable services for people with intellectual disabilities. And yet it constantly appeared that the most client.centred services were actually being run by struggling NGOs. Time after time I heard stories of government services refusing to support or collaborate with the NGO sector. This was even apparent in the unit where I was based, where there were frequently difficulties in the collaboration designed for the benefit of eight young people— political agendas and a lack of understanding often stood in the way of cooperation between the two, ultimately resulting in the service users losing out.

In the context of European ‘best practice’ for community integration for people with intellectual disabilities and community integration, this experience has far reaching implications. The lives of people with intellectual disabilities in Romania have undoubtledly improved somewhat in the past 20 years, but the main care providers (the government services) are still hung up on institutions, large structures (that provide jobs for people without disabilities) and specialists—mainly in physiotherapy, psychiatry and some psychology.

The medical model is widely used with terms including ‘rehabilitation’ constantly being bandied about, coupled with a culture of ‘they can’t’ (referring to young people with disabilities having an IQ too low to complete certain tasks). In terms of financing, the Romanian government appeared to favour county council (its own services, often ‘mini institutions’) or Orthodox Church.run services (predominantly based on the charity model), rather than working with NGO services which tend to provide the highest quality.

Possible Solutions

The repercussions of the Romanian government actions for people with disabilities (and also for orphans, at.risk children and adolescents and people with mental health difficulties) are profound. The government is doing little to educate people around these issues and there is a lack of legislation to empower people with disabilities and their families. In order to improve this, the NGO sector must work together to lobby the government and encourage stronger links between government services and their members. Government funding to sustain NGO services is a practical and cost-effective way of further developing services for people with disabilities. Unless the NGO sector and the government services work together more effectively, it is unlikely that a developed social system based around the needs of the service user will be developed in Romania. Social services are not a priority for the incoming government; during the political campaigns of November 2009 issues regarding social services were rarely raised. Nonetheless, the Romanian government has already started working with NGOs on a small scale to dismantle the system of institutions that still exists around the country. Expanding such collaborations and developing small, community-based projects as an alternative to large institutions would make it possible to provide a full life for the next generation of people with disabilities in Romania.

Marianne Griffiths studied at Dublin Institute of Technology where she received a BA (first class honours) in International Business and Languages (Spanish and French). She has worked with people with intellectual disabilities in a community residential setting for several years, providing care, promoting self-advocacy and encouraging the independence of the service users. Marianne also worked providing family support to children and teenagers with intellectual disabilities living at home. She completed the Msc in Global Health in Trinity College Dublin where she received the Kevany Prize for academic excellence. As part of this Master qualification Marianne lived in Bolivia and researched advocacy and empowerment for people with disabilities. She has also lived in Galati Romania.