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.