Interview for Dnevnik

Yes, they also wish they were not needed at all. And that the state would take more responsibility. To look after and provide for at least the basic needs of the disadvantaged children, abandoned by their families. To finance much more and more effectively. To have an individual approach to children’s needs, to provide quality care, not just any care. And not to be so dependent on sporadic and unsustainable charity campaigns.

But until all this happens, can we wait? What choice do we have? We cannot just leave these children like that, says Alexandrina Dimitrova.

They are The Cedar Foundation and Alexandrina is the foundation’s Executive Director. For them, the difficult, even hopeless cases are not a lost cause. These cases for them are children with their own individual needs. They are Cedar’s cause, the everyday life of the 94 specialists and several more people in Sofia, who are trying to make sure that at least the basic needs and resources are covered.

Cedar manages 7 family-type homes for children and young adults with disabilities and one for children without families. They also have a center where adults with disabilities and their parents can get hourly care, consultations, attention, and rehabilitation.

24-hour care is provided to the 68 children, most of which with heavy disabilities, in the Kyustendil and Kazanlak centers. The young adults, without families to take care of them, are 13. They need very serious support, Alexandrina notes, as they have been in different homes and institutions for years, they were in foster families, they were taken, returned… and now are almost unwanted, because they are difficult, they are not small children and they carry their own problems and challenges.

As per the foundation’s data, children with disabilities, in homes in Bulgaria, are a little over 3000. In the last years, they were taken out of the inherited from the socialist period homes and institutions and transferred to family-type houses and homes, where they would receive better care and will be fewer people in the same place.

The state really does have a policy for shutting down homes, this is an undeniable success. There are successes for sure and Bulgaria is given as an example in our region. At the same time, not everything happens as we wished it would. And mainly, we wish people would understand that the physical shutting down of a large institution and building new small houses in its place, is definitely not the end of the process. In fact, this is only the beginning of the process, says Alexandrina.

She notes that now over 90% of the children and young adults, who used to live in institutions, are not there. Over 280 family-type centers were built across the country and barely 20-24 of them are managed by non-governmental organizations, which is less than 10%. Alexandrina shares that recently, almost surprisedly, she found out that actually, Cedar is the NGO, which looks after the biggest number of family-type homes for disadvantaged children.

“Municipalities want to delegate the management, they have called us to offer it. But organizations refuse because they know the financial, human and time resources that need to be dedicated. We have discussed it with colleagues, who manage such centers and the truth is that little by little, some of them start to get exhausted. Some of them might even give up”, she comments.

She also adds: “Providing quality new care does not just mean to build new centers and to provide minimum financing, but also to invest in the people, who work there, to provide them with enough motivation and training to do a job as difficult as theirs”. And it also means that the country should make this process sustainable. Unfortunately, this is far from how things actually are.

Each year Cedar needs to raise at least BGN 600 000 from corporate and private contributors, so as to guarantee the quality of care that is considered the necessary minimum. In order to be certain that we are doing things properly, explains Alexandrina. She wishes they could do even more, for example, to provide a personal carer to each of the children, who require around-the-clock care. At the moment, this is just a dream.

First and foremost, the foundation invests in people. If we only count on what the state has laid out as a standard and financing, our team would be 25 people less than it is now, the Executive Director of the foundation shares. The foundation calculated, however, that without these extra people, there is no way to pay the needed attention to each child, to proceed individually, according to its needs, to help the child develop and advance. In a situation of crisis, there are enough people to react and support the child. And furthermore, the specialists are not under such pressure that might prevent them from being adequate and capable of providing the necessary care.

Workers in the centers often get trainings, which are conformed to the current needs and are as practical as possible, which makes them very useful. Each month they get consultations with an external psychiatrist, where they can discuss the difficulties in their work and the approaches to the different children and young adults. This is extremely important, considering the difficult job they are doing and the tough cases they are dealing with.

Further to the above, the foundation invests in therapy, which at least in theory, should be covered by the state. In order to avoid all the waiting, often children go to private doctor consultations. Apart from that, the organization had to hire a specialist – physiotherapist, who is experienced and prepared enough to work with children, who had been lying in their beds in the institutions for years, without any movement or therapy. Children in this situation should have the opportunity to receive free physiotherapy in specific centers, however, the specialists there cannot take such complicated cases and provide adequate physiotherapy. This is why Cedar funds this service as well.

The situation with providing physical aids is the same. Recently one of the centers received two wheelchairs, specifically crafted in Romania, for two of Cedar’s children. They are specific because they have the needed soft padding and support, that will help the children take a position, which will not press them, disable them even more, or hurt them, while they are using the aid.

The wheelchairs are second-hand, but the Romanian company adapted them according to the needs of the two children. The wheelchairs were funded by sponsors and cost approximately BGN 1200 each. “We did receive wheelchairs, covered by state funds, but they were absolutely inadequate for the needs of these children and young adults. It’s true that we got the wheelchairs from Romania with a great discount, but I don’t believe they are much more expensive than the ones, provided by the state. The question is what for and how effectively the funds are spent”, Alexandrina explains.

In Cedar, they believe they cannot proceed without the extra funding, which, as they note, is very difficult to find, because people are more inclined to donate to causes, one-time and particular cases for support of a single child. It is more difficult to engage people into financing long-term all-day activities. And we have particular expenses every day, that cannot be overlooked, notes Alexandrina.

Not unless they want to be useful enough and provide quality care for the extremely difficult cases, inherited by the institutions. And this care reaps results. In Cedar, for example, they did not give up on a boy, who came to them two years ago and had been transferred all over until that moment. When he arrived in the family-type center, he was 10 years old and had already been moved in between 8 different places. “Institutions, foster families… he had changed the place where he lived each year. Everybody had given up on him. Because he is very tough and with difficult behavior, they had all decided they cannot deal with it”, Alexandrina remembers.

He is diagnosed with a mild form of intellectual disability, but practically, his issues are deriving from the fact that he had been abandoned multiple times and had been through serious violence. “Arriving to us, he was in a very bad condition, aggressive to the team, to the other children and even to himself. But we realized that he was just missing security, he was expecting abandonment again. And because we did not give into this, did not leave him, but persisted in finding activities, which were interesting for him and helped him exhaust some energy, he changed a lot”, Alexandrina says. Apart from being much calmer, they boy is now doing better in school, he has friends there, who come for his birthday, he went to the seaside for the first time last year, he learned to swim. “He believes in himself more now, he has calmed down”, she also shares.

Another boy, with cerebral palsy, goes to a public kindergarten. Children, who were left to lie in their beds all day before they came to Cedar, are now enjoying everyday walks and suitable outdoor activities for them, in their particular wheelchairs. The foundation invests a lot of effort in helping each child socialize as much as possible, to make it as individual and independent as possible. To get them at least a part-time job, if they have the abilities for it and to help them keep it. To make them feel useful. Happy. Each one, according to their abilities.

But for all this, the foundation needs at least BGN 600 000 a year. If you transfer the BGN 600 000 gathered by Cedar each year for the management of their less 10 centers and recalculate the needs of all the 280 such centers, the under-financing of the state will turn out to be very serious, experts calculate.

“For us, the perfect option would be if the state provided more financing for these centers so that it would cover at least the minimum basic and mandatory service. And our fundraising was spent on additional things like camps, new work methodologies, vacations, etc. But not for basic things. And right now we have to cover really basic things so that we can provide quality care and be sure that what we do has a meaning”, Alexandrina also shares.

In an attempt to turn around state policies, in recent years the foundation has been reaching out to institutions, having conversations, providing recommendations.

Last year, an expert group on deinstitutionalization, where Cedar are co-chairing, made an analysis, and gave recommendations on what needs to be changed.”We described the severe need for investment in people, in qualification, we presented it in front of the people, who create policies in the area. We managed to get an increase in the funds and instead of the traditional 10%, now we have 18% per year”, the foundation’s executive director notes.”This might be a step in the right direction but surely is not enough. Furthermore, long-term arrangements and sustainability have not been discussed, additional policies for the upcoming years have not been planned”, she adds.

Alexandrina continues to hope that the experts will soon be able to persuade the state, that a thorough rethinking of care is needed, stressing on the individual approach, not financing “per capita” per child, but according to its needs. Long-term sustainable policies. She also notes that it’s very demotivating when work in this area and all conversations need to start from the beginning, each time the government and responsible politicians changes.

She also thinks that: “Everything would be much better when we are no longer needed”.