When the break-up of the communist regimes in Eastern Europe began at the end of the ’80s, we in the European Association of ILSMH (a regional section of Inclusion International) held a meeting to see how we could assist people in those countries. We managed to bring some parent representations out and they talked about the plight of people there. They had been forbidden from forming associations until then. The decision was made to twin with the emerging states. This was around the time of a lot of alarming publicity about Romanian orphanages and institutions for persons with disabilities.
In 1988 we had an IASSID conference in Dublin; one Bulgarian was able to attend–Professor Timchev. I met him again in Paris in 1990 and he invited IASSID to send two delegates to a seminar on mental handicap in Bulgaria. Stephen Kealy and I were the ones who went; the seminar topic was early intervention and the role of parents was discussed. They said they would like to form a parents’ association. We had our first meeting in a hotel room–there were about 7 or 8 parents there. That’s how the idea started of forming the parents’ society; that was October 1990-
At the next Council meeting of NAMHI (I was President that year) I asked if we might twin with the Bulgarians in some way to help them get going. I asked NAMHI to pledge about £2500 for three years to help them establish a little office. The Council decided to set up a special fund and we named it after Joe Adams. That’s how NAMHI’s involvement started with the Bulgarian parents.
The Sisters of Charity of Jesus & Mary began a continuing professional interest and a voluntary scheme of salary deductions was arranged for the staff. At that time EU funds were available under the PHARE programme–we paired with an English and a Welsh group on a two-year project which also helped the Bulgarian parents’ association. This included setting up a central office for the national society and four pilot projects for day-care services–there hadn’t been any there before. We hired a development officer who really helped to get things going–at the end of the EU project, they had the four pilot projects and 32 branches of the national society in towns around the country. When that project lapsed we looked for new European partners to help fund further projects with us. We [at Sisters of Charity of Jesus & Mary services] found ‘Philadelphia’, a Protestant Dutch parents’ group (the original Orangemen working with an order of nuns!) and we started joint projects to continue the stimulation of new day-care centres.
In 1996-97, the economy of Bulgaria collapsed totally, with over 1000% inflation. Over the following two hard winters, we were able to give some humanitarian aid which the national society distributed through their branches to families, to cover some basic food and. NAMHI’s fund was particularly useful in helping this and to keep their central office going.
NAMHI was one of the co-sponsors of our first Bulgarian human rights seminar on disability in 1998, and they will co-sponsor a second one to be held in Sofia next October. Primarily NAMHI funds go toward the national society, which is still quite weak, although the regional branches have got very strong. (We agree to support them only if they are active members of the national society; the national organisation is essential in order to lobby for legislative change.) NAMHI also pays a portion of their membership fee to Inclusion International to maintain their international links. As well as using the NAMHI funds for awareness raising and maintaining a basic office, sometimes there’s a real crisis–on one visit last year I came across a place where people were naked and tied to beds. We told them that if they’d do certain basic things, we’d give them a bit of support to buy warm clothing and bedding etc. On my last visit they had made sufficient efforts that we could offer them some money.
So that’s really how the work has gone. We don’t give large grants to anyone. Our main purpose is to stimulate alternatives to institutional care, because the institutional care has been terrible–parents know if they let their child go in there they might live no more than a year or two, the death rate is so high. And we have succeeded to the extent that there are now about twelve children’s day-care centres in Bulgaria and the first three adult centres are up and running, all stimulated by ourselves and the Dutch. The Bulgarian society branches negotiate with their municipality for a building and a basic staffing budget. Then we offer a guarantee of about £2500, over three years, to pay for basic equipment and heating; that promise of funding gives parents a bargaining tool with the municipalities. In the Irish situation, staff costs represent about 75% of total costs within services; in Bulgaria salaries are so low that staff costs make up only 25%. The average salary for a teacher in Bulgaria is less than £70 per month.
I coordinate the support of colleagues in NAMHI and the National Federation. Kerry Parents and Friends have a project in Vidin. The Bon Savauer sisters in Dungarvan support a project in Pazardjick and Cregg House in Sligo have a project in Lovech. Galway County Association is about to start a project in another town. The Sisters of Charity of Jesus and Mary assist a children’s project in Pazardjick, a children’s home in Prostorno and another one in the mountains in Durkovo.
We give small amounts of money to allow them to boost the local economy by purchasing locally, and accounting for it. Now that the economy has stabilised somewhat, we hope to look at new ways to bring people who maybe work in a day-care or adult centre for a fortnight, or to have a two-to-three day seminar there, perhaps on early intervention with personnel from the Galway Association. But I’m always worried about the costs of airfares when we send people in that direction, and whether the people who may come here will stay in mental handicap services. If £3-4000 is available, it can start a basic day-care service. I’d much rather to get something going, and then it can be improved. Staff motivation remains an issue because salaries are so low and they’ve so little experience from the old system. Besides, staff may not have been paid for two or three months. But in the new day-care settings, children are dressed by their parents and families come in and out, which is so much better than in the old institutions. There’s great interaction between staff and the children, the care is very warm, but basic; active programmes are limited. They haven’t the budget even for paper and equipment–only basic food really, and sometimes they have to beg from companies for that. Sometimes the slow progress would frustrate you, but you have to think where these people are coming from and their daily struggle to survive. They’ve very little social support, except for their extended family system, which is still very good.
What can we learn from them? Well we might note, in our changing Ireland, that their day-care services remain open from 7 in the morning to 7 in the evening! That reflects their economic reality, and maybe increasingly, ours too! Irish day-care services have developed over a long time and still operate on the premise that there is one person at home during the day; services haven’t really adapted to newer realities.
Whenever I go to Bulgaria, I meet with the parents’ groups in the branches–in the evening for a very simple meal, maybe with homemade drink, but they celebrate. For them every achievement is marvellous. It’s lovely to see that; that’s the buzz for me.
There are key people around the branches whom we’ve set up with a computer and email. There’s a liaison officer with very good English who also has a computer in her home–she’s a volunteer–and once a week we get a report from her and from several of the branches of the society.
The human rights focus is the only basis on which you can work now. We developed services in Ireland largely from the motivation of Christian charity, and there’s nothing wrong with that–the motivation was good. I think the downside of it is that it has instilled a grace-and-favour attitude in some people. Now we’re moving to enshrining rights, with the constant support of well motivated people to ensure that the rights are vindicated for vulnerable people. Rights can all be enshrined in writing, but it won’t work unless there’s a strong group to monitor that the rights are fulfilled, and to be ready to scream if they’re not being fulfilled.
All the human rights cases push out the boundaries–and they need to be continually pushed out. NAMHI has done that for years, although it hasn’t always got credit for it.
There’s an interesting debate. If you look at Bulgaria, I suppose ideally we’d start out with full inclusion and integration. But it’s impossible for the majority of parents in Bulgaria to think of society accepting inclusion for children with learning difficulties. They see day centres as great progress. If you look at Irish society, having a specialist system has developed a pool of expertise which can be adapted for education within mainstream education.
In Bulgaria parents of children with intellectual disabilities have come from being neglected non-citizens, to having the opportunity to sit down with the municipality and say ‘my child has rights and I want you to fulfil them.’ That’s one of the functions of people like me going there I’m brought along to the first meeting with the mayor–because of my position in Inclusion International and its links with the UN, the municipal authorities receive me courteously and it helps the families get a hearing. I always send a report to the Bulgarian ambassador here when I come back, too, to keep the momentum moving at several levels. Parents would never have done this kind of thing before, but now they’re becoming experts! Inclusion International has given me a great platform. For instance, when we have our human rights seminar in Sofia in October, speakers will come from other countries, leading members of Inclusion, and Bulgarian government ministers will have to come to meet them, and the media will be there. That raises the profile of the needs and rights of people with intellectual disability. At all the sessions there will be a role for parents and for people with other disabilities too–improvements for one group will improve things for others too. They really feel they’re making progress. In Ireland we’re used to ‘buttonholing our TD’ to put our case, but that’s all new for them in Bulgaria–making use of democracy. They’re very smart people every year they grow in confidence.
Another thing, now that Bulgaria is an accession state to the EU, Article 13 of the Amsterdam Treaty will be very useful in pushing along their social development and equality policies. There’s a move in the present member states to include a charter of fundamental rights in the next revision of the Treaty. That would enshrine the UN Convention on the Rights of the Child, etc. In the preamble to the Amsterdam Treaty it says that a country which doesn’t respect human rights may not be a member; this is relevant to the Austrian questions at present. And the conventions and the treaty will be very good in terms of the enlargement process as countries like Bulgaria seek EU membership.