The human face of the social care, to which the state is a debtor
by Martina Bozukova, Mediapool, December 10, 2019
“The mistrust in NGO’s is largely due to people’s lack of knowledge about our work. Messages against non-governmental organizations, that work with our fears, are remembered very easily. But this is the fear of the unknown. Similarly, there were fears when the process of deinstitutionalization began, and people protested and signed up against the establishment of centers for children from the state institutions… So, maybe we need to get better at reaching out to the society,” says Alexandrina Dimitrova, executive director of the Cedar Foundation.
In the past 10 years, Cedar has been developing a successful model of social services for one of the most vulnerable groups – “Bulgaria’s Abandoned Children” – the children from the former state homes, most of whom were closed in the process of deinstitutionalization.
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We see a huge difference in the young people we took out of the institutions. After proper physiotherapy, a 9-year-old boy started walking, while everyone was saying it was hopeless.
Interview with Alexandrina Dimitrova for Monitor
Mrs. Dimitrova, how long have you been involved in the social sphere? Is your foundation the first to independently close down a state institution? Tell us more about it.
The Cedar Foundation has been active for 14 years, and the process of deinstitutionalization has always been the focus of our work. We are the first to close down a specialized institution for children with disabilities. It was located in the remote village of Gorna Koznitsa (20 km from Kyustendil). More importantly, we provided care and a family type environment for all the children and young adults who used to live there.
Over the years, we have been able to participate in the closure of 11 more institutional homes, and we currently manage family-type centers as well as a rehabilitation center. We provide 24-hour care to nearly 70 children and also specialized support to young people with intellectual disabilities and their families.
How do your practices and efforts influence the children and their parents?
There is a huge difference in the development of the children and youth that we took out of the institutions. It is important to say that they are predominantly severely disabled children, many of whom have spent many years in an institutional setting.
How did this environment affect them? What are your observations?
They have serious mental traumas and distrust the people around them. Most of them have gone through several consecutive abandonments and their disabilities are both emotional and social.
Fortunately, in the new environment, thanks to the intensive care of a well-trained team, things are changing. We have many stories of children and youths, whom we were able to help.
One of them is about a 9-year-old child. We took him out of an institution for children with disabilities. He has cerebral palsy and several accompanying diagnoses. A non-verbal kid who always needed a companion – someone to hold his hand so he could walk.
In a year’s time, after physiotherapy and a lot of effort, we witnessed his first steps. At the age of 9, he started walking! Now, this kid welcomes everyone who visits the center- running towards the door, smiling from ear to ear. We are proud of him!
Do you manage to cover all the medical needs of the children?
We invest funds in additional staff and different types of therapies, which we raise through corporate and individual donors throughout the year. We do not have any medical staff to work directly at the centers. There are social therapists and social workers, and we rely on partnerships with GPs and hospitals in the cities where we operate. Whenever we have a problem, we get in touch with them.
Our foundation believes that caring for the children and young adults in need should not only depend on the social system but on each person and on society as a whole. We all need to share the responsibility.
Are donors open to help?
It was very difficult at first. They were not ready for this process themselves, and it took us time to build good relationships. Now, years later, I can say that things are much different, communication is easier, and their engagement with the problems is greater.
Healthcare professionals in hospitals respond whenever we need support, and I hope this happens anywhere in Bulgaria. We are aware that there is a lack of capacity and resources in both the education and health system. But ultimately, it is important to work together because we want these children to develop and be able to live fully, to be part of society.
Is it difficult to educate children with disabilities?
There are only 11 schools in Bulgaria that specialize in the care of children with autism. The children in your family homes have specific physical needs. Doesn’t this make the educational process even more challenging?
Yes, it is very difficult, especially for children with intellectual disabilities. They mainly attend auxiliary schools. We also have a child with an intellectual disability who is in a public kindergarten. We see that it is difficult for the specialists who work there, but they are too few.
Children without disabilities often face the problem of rejection. One survey showed that only 40% of parents approve of their kids studying with a child who lives at a center. We, at the Cedar Foundation, put a lot of resources into preparing our children for school. They are usually teenagers who have had to repeat classes, often fall behind their peers, or have to start their studies from 0. They also need serious support.
Does the number of abandoned children with disabilities continue to increase?
I can’t tell if it is increasing, but we are working with parents who tell us that their difficulties get bigger as the child grows older and becomes an adult. The reason for this is that there are not enough social services to support them. These young people remain isolated, without access to services and work. Through our Social Rehabilitation and Integration Centre, we try to support such youth. We already have 5 cases of disabled young adults who were able to find employment with our help.
We are not only supporting them but also their families. Our idea is that both parents and children are calm and confident to handle the challenges they are faced on their own.
Do you get support from the state and other institutions?
I think that Bulgaria is a good example in this aspect, as NGO’s work well together and have the support of the Ministry of Labor and Social Politics, which is one of the drivers of major reforms related to deinstitutionalization.
What we need to focus on is ensuring a good quality of care for the children and youth we took out of the institutions. Our appeal is to invest more in people – those who take care of them and are employed in the social sector. They are the ones who are with the children and need to be motivated and supported to be able to cope with the difficult situations they often come across because of the specifics of their job.
After the changes in the People with Disabilities Rights Protection Act, is it easier for young people to be employed, what are your observations?
I think it’s too early to say because the change in the law happened not long ago. What we are seeing with the young adults who began to work is that the mediator played the most important role. A mediator supports and helps disabled people to work.
We have youths who are employed in kindergartens, helping the support staff. We also take care of a young man who works part-time in a municipal laundry. I want to tell you that their confidence has grown. And I’m sure this is the right path to successful social inclusion.
There is a shortage of specialists who work with people with disabilities.
Interview with CEO Alexandrina Dimitrova for Bulgarian National Radio (program Horizont)
Author: Valeria Nikolova
The Cedar Foundation is an active participant in formulating, implementing, and evaluating policies in the field of deinstitutionalization. The organization has been included in the closure of 11 institutions for children with disabilities.
“To speak of a failure in the Reform of child care in Bulgaria, would be a very extreme statement,” commented Alexandrina Dimitrova, Executive director of the Cedar Foundation.
“It’s a fact that all homes for children with disabilities were closed down, and the kids were taken out of a really difficult situation of complete isolation. It’s a fact that not only family-type centers but also foster care and community-based social services in support of families were developed,” Dimitrova noted. At the same time, there are indeed problems and NGOs are constantly signaling for them, she added.
“For us, the main problem is the lack of investment in the people who work in these centers. We, at the Cedar Foundation manage 8 such services, but there are over 280 in the country. And it is no coincidence that the non-government organizations, involved in the management of these centers, can be counted on the fingers of one hand,” Alexandrina pointed out.
With the current amount of state funding, it’s difficult for us to provide enough people in the centers who are qualified enough to work with those groups. The centers accommodate children with severe disabilities who have gone through traumatic childhood experiences, Dimitrova explained.
“In most cases, there are 12 to 14 children and young people living in a family-type center with usually one or two people, working in a shift.”
Corporate donors – not a sustainable practice
The Cedar Foundation provides additional funding through corporate donations to hire more professionals. “Fundraising allows us to have 25 additional employees in our 8 centers. Unfortunately, in the long run, we cannot rely on the donors to continue to pay for salaries,” Dimitrova commented.
Training and continuous support for the teams working in the centers, is always needed, she said. The lack of professional supervision, which normally should be a standard for social work, leads to burnout and employee turnover.
The Nursing Home Reform Act
Working with elderly people will be more difficult and will require much more qualified personnel. “My appeal, once again, to the Bulgarian government, is not to invest solely in infrastructure, but also in human resources,” Alexandrina concluded.
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”.
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