There is a place in Ruse with an almost impossible name to remember, but with hard-to-forget stories. Nadezhda Tsekulova visited a center where children with serious illnesses and complex needs live to try to understand what good care means in Bulgaria today.
In Bulgaria, “palliative care” is still understood as “to relieve the pain of the dying”. And they are this, but much more. The lack of a sufficient understanding of what modern palliative care is prevents us from providing it in good quality for everyone who needs it, including children.
However, in some places in Bulgaria, individual specialists and organizations are trying to apply practices that in developed systems are accepted as the essence of palliative care – alleviating the effects of symptoms and supporting more joy for those whose lives are expected to last short.
We found one such place in Ruse.
Ida (not her real name) is five years old and lives in the Center for family-type accommodation for children and young people with disabilities in need of constant medical care in Ruse.
Were you able to read the full name of the place?
Remember it, because we will need it later in this text. But now let’s go back to Ida. I met her when one Sunday in May I arrived at the Center, part of United Children’s Services “Slancho”.
Ida has a severe diagnosis and multiple disabilities. She is almost immobile, has no cognitive abilities, feeds on a probe, and the team says that she is “their heaviest child”, although she looks tiny and fragile as a drop.
While they are showing me the rooms and telling me about the children, the principal Milena Nedelcheva puts the girl in his bed and asks him: “Why are you sad today?” She cannot answer and is not even sure how conscious she is of her sadness. But the sadness is there. One of the tasks of the team is to try to treat at least her.
Ida is one of the children and young people at the Center who receive palliative care, although on paper they are not called that.
The children in Bulgaria who would receive services from the spectrum of palliative care, if they were regulated, are probably about 5000. The number is extrapolated from the data of other countries in the first analysis and mapping of the needs for palliative care for children in our country, prepared in 2018 by the team of “Ida – Foundation for Palliative Care for Children”.
I visited the Center in Ruse, managed by the Equilibrium Association, in search of an answer to the question of what is really happening in our country at the moment with children with multiple disabilities and life expectancy. What I saw is not a representative sample of the system, but a snapshot of one particular team and its efforts in caring for specific children in May 2026.
Eight children (as much as its capacity) are accommodated in the Center, two of whom are already grown up young men and girls. Since the creation of the service in 2016, about 45 children have passed through it, and more than half of them have either been returned to their families after working with their parents, or placed in foster care. The team is especially happy with the several successful adoptions despite the health condition of the children.
After the National Strategy “Vision for the Deinstitutionalization of Children in the Republic of Bulgaria” in 2010 planned the reform aimed at closing all institutions for children, the direction is to create a wide range of services that should help families at risk to stay with their children.
For children with the most severe disabilities, however, this is still a difficult process: on the one hand, because of the lack of sufficient support for families, on the other hand, because of fear and withdrawal of the biological parents themselves.
One of the places where these children can get is precisely the Center in Ruse. Elena Petkova, program director of Equilibrium, uses the phrase “pegegetto” in her daily vocabulary. The expression comes from the abbreviation of “permanent medical care” – PMG, a stable phrase contained in the name of this type of small residential services for children. In our country, there are currently “eight plus six” such centers.
“Those that I call the ‘old eight’ are the pilot eight centres,” says Elena. They are opened in the buildings of the homes for medical and social care for children closed in the first years of the reform in Ruse, Targovishte, Gabrovo, Montana, Sofia, Pernik and in two in Plovdiv. They fall under the umbrella of the Ministry of Labor and Social Policy and are financed under the Social Services Act.
Later, the “new six” centers for children from the same group appeared. They are in Kardzhali, Haskovo, two in Stara Zagora and two in Kazanlak, but they are already under the umbrella of the Ministry of Health (MoH) and have been opened under the Medical Institutions Act.
Thus, explains Elena Petkova, the same target group of children falls into similar services, but regulated and financed in a different order. The formal name of the social service is the Center for Family-Type Accommodation for Children and Young People with Disabilities in Need of Permanent Medical Care – Children’s Center. And the Center for Complex Services for Children with Disabilities and Chronic Diseases – CCODH, has a different type of structure: a medical institution at the Ministry of Health, which can provide medical care, rehabilitation, parental training, mobile support and specialized palliative care.
The problem, according to Elena, is that the reform creates “integrated” services on paper, but does not always really integrate health and psychosocial care. According to her, it is now necessary not just to close the last homes for children with disabilities, but to introduce a common standard and cross-funding, so that children with severe disabilities receive the same quality of care, secure access to medical care and psychosocial support, regardless of whether the service is to the social or health system.
“We may have, we may not have”
The team of “Equilibrium” is constantly raising funds because the payment it receives from the state for its activities would not be enough for care according to the best practices.
Often, children need specific medications or aids. The menus are individual, and there was a period when the Center took care of two children at the same time in need of expensive medical food, which at that time were not paid for by the state. Donors also help with the toys, for the refreshment of the environment, for the variety of aids so that each child can be as active as possible according to their capabilities.
Two of the children attend a mass kindergarten despite their problems, and the rest meet other children during the activities in the day care center, maintained by the same organization. Part of the team are also the supporting specialists – speech therapist, psychologist, rehabilitator – who work with both children raised in their families and long-term residents.
Although it is not a medical institution, the Center always has a nurse on shift and a contract with a pediatrician. One of the most important people in the network of specialists is the pediatrician Dr. Veska Hristova. Elena Petkova specifies that “according to the methodology, we may or may not have” such a doctor and most such centers do not actually have their own pediatrician at their disposal. Dr. Hristova is not on the service from 8 am to 5 pm, but she is “on the phone and available non-stop”, she comes on schedule, follows the children, trains the staff and reacts to difficult situations. “We have had many critical moments with children,” says the principal Milena Nedelcheva.
The other permanent partner is the University Hospital “Kanev” in Ruse. According to Elena, the methodology provides for a specialist from the regional hospital to have direct engagements with the children in the service – to participate in the assessments for accommodation, to monitor their condition and to assist in the need for hospital care. In Ruse, this is the head of the children’s department. “When we look for them and when necessary, they have never refused us,” says Elena about the team of the University Hospital “Kanev”. She emphasizes that in emergency conditions, children from the Center are prioritized for emergency care and hospitalization.
A particularly important part of the staff’s commitments is that children are not left alone when they are admitted to hospital. “We provide them with an escort 24 hours,” says Elena. Usually this is a babysitter – a person who knows the child closely and can sense a change that is not immediately visible even from the tests they have had.
The central idea is the family
For the Equilibrium team, the family environment is not an abstract principle, but part of the care itself. Elena Petkova says that parents are very insistent on accompanying the children, to come, to stay with them during the day, to study, to take care of them. The goal is for the family to gradually begin to understand the child’s condition and learn how to meet his needs.
The team works with children, but also with parents, sometimes in neonatology. Elena gives the example of a baby with a slit in her palate and lip, who was initially thought to be placed with them and fed with a tube. Together with Dr. Hristova, they meet with the parents, support them to try feeding with a special pacifier, and the head of neonatology agrees that the child will stay longer in the ward “until the parents are trained to feed him.” Thus, the child does not get to the residential service at all, and from neonatology he goes home.
But this happy scenario is not always guaranteed. Then the team is looking for another way to a family environment – foster care or adoption. Since 2016, four children from the Center have been adopted, mainly through international adoption. For Elena, this is proof that the effort is worth it:
“I am very proud of the quality of care we provide, but we cannot replace family. It’s just that children radically change when they return to their families or go into foster care, or are adopted.”
A favorite for the team is the story of the already almost 7-year-old Manny. Today he looks completely healthy. He goes to school, has caring parents and a poop who teaches him English because he was adopted abroad.
Mani’s story begins in the maternity ward in Ruse on a hot August day. Manny has rapidly progressive hydrocephalus, a condition in which too much cerebrospinal fluid builds up in the brain. In babies, this leads to an abnormal increase in head circumference, as happens with Manny. The first doctors with whom life met him expected hydrocephalus to lead to a quick end to his recently begun path. His mother did not find the strength to be by his side in this challenge and so the boy ended up in the Center.
“However, we refused to reconcile. We did an imaging study, contacted Prof. Tsekov to Tokuda Hospital and we sent him to him,” says Milena Nedelcheva. The professor agrees to operate on him, and this turns the boy’s whole life upside down. By the time he reached his second year, he was walking, he began to speak, and after being placed in a foster family, he fully compensated for the delay in his development.
Later, he was adopted abroad and it seemed, an exciting and loving future awaits him. According to Elena, the boy is a vivid example of how children blossom in the family. However, Milena Nedelcheva notes that there is also something painful in these stories – despite the efforts of the team at the Center and the doctors here, for many of the children “there are a lot of things left that have not been done” to receive the best treatment and the additional care needed to develop their potential.
To support families returning or placing children, the team is available to respond 24/7. “We don’t have a regulated mobile service,” Elena explains and tells how on Christmas Eve one of the nurses from their team urgently visited a family to service the child’s feeding probe.
“We just do what we have to do so that the children can stay with their families.”
Escaping the medical model
At the end of our conversation, I ask Elena if it can be said that what they do at the Center is palliative care.
“Yes, that’s what they would call in some other countries – we’ve been there and we’ve seen.”
And they are probably called that in the centers under the umbrella of the Ministry of Health. However, how integrated the care that ends up there is, is not entirely clear to Elena. “It is key for us all to work according to a common standard, to have a standard for the medical part of the service, but also for the psychosocial one, and to know that it is observed wherever children in need are.” According to her, one of the big risks facing the system is that the focus continues to fall on the “medical model” from which “we have to escape”.
Between drugs and toys
At the beginning of this text, I asked you to remember the long name of the place where Ida lives. It is in administrative language, capable of cramming almost everything into letters – except for the care itself. Because no child lives in an abbreviation. He lives between medicines and toys, between the nurse and the speech therapist, between the hospital room and the person who will not leave him alone at night.
The team in Ruse is doing just that, driven by the belief that this is what good care looks like. Another topic is how much longer it will exist only where someone has decided to do more than what is required.