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- It's difficult, but it's possible: how helping one child changes working with orphans
It's difficult, but it's possible: how helping one child changes working with orphans
The system of assistance for orphans with severe disabilities is built up, but it is often carried out formally in the field: much depends on the specific region and institution. As a result, children with serious illnesses may wait months for prescribed therapeutic nutrition or not receive specialist advice. Izvestia has learned who helps to overcome administrative and organizational obstacles and how helping one child turns into the formation of systemic support for World Orphans Day, which is celebrated annually on November 9.
How one problem leads to a systemic solution
In 2024, the Smolensk Region faced a situation where the necessary assistance was determined, but could not reach the child. At that time, the Road of Life Foundation, as part of its Medicine Together program, organized a visit by specialists from the Federal Research Center for Nutrition and Biotechnology to one of the region's boarding schools. They revealed that the pupils had chronic protein and energy deficiency of varying severity.
— It is important to make a reservation that it was not a lack of attention from the staff of the institution.: they took care of the children every day and tried to provide them with everything they needed. It's just that special knowledge and experience are needed to identify and correct complex eating disorders, which may be lacking locally," Ekaterina Pankova, head of the program directorate of the Road of Life Foundation, explained to Izvestia.
Dietary recommendations were prepared for each child and specialized therapeutic mixtures were prescribed. But it wasn't enough. It turned out that there was no clear mechanism in the region that would make it possible to regularly provide children with the necessary nutrition: it was not clear who was responsible for making appointments, how the need was calculated, who organized the purchase and how the food should go directly to the child.
The temporary decision to admit children to the regional children's hospital helped at the first stage, but it was important to find a permanent solution to the problem. By that time, the foundation had already established a close relationship with the regional government — a cooperation agreement was signed back in 2023. And in September 2026, the Ministry of Health of the Smolensk Region established a new procedure for planning and providing children with therapeutic nutrition at the expense of the regional budget. Thus, thanks to one case, it was possible to build a system of assistance at the level of the constituent entity of the Russian Federation. A sequence of actions, responsible persons and sources of funding were formed. The institutions have already stated the need for 2027. The next stage is to test the new order in order to take into account possible difficulties and consolidate it on an ongoing basis.
— We encounter similar difficulties in other regions. A child's need for specialized nutrition is not always identified in a timely manner, and existing medical recommendations may remain unfulfilled for a long time due to difficulties with financing, procurement, or interaction between departments. It also happens that the necessary mechanisms are provided for by federal legislation, but local specialists do not know how to use them," Ekaterina Pankova said.
State guarantees for children living in boarding schools are generally provided, noted Anastasia Zhdanova, program director of the social project of the Popular Front "Region of Care", head of the palliative care monitoring program in the regions. But the existence of a state guarantee is one thing, and its practical implementation on the ground is quite another. Each region has its own specifics, but the systemic obstacles themselves are repeated.
In many regions, the main difficulties with the access of children from orphanages to timely and qualified medical, psychological and legal assistance, according to Ekaterina Kantinova, director of the ANO Service for the Protection of Rights, are organizational and interdepartmental in nature. And sometimes the problems turn out to be extremely bureaucratic: in particular, in order to obtain therapeutic nutrition, fresh test results are required, which expire faster than the medical commission passes.
— There is also the problem of the lack of clear algorithms and regulations. For example, federal legislation gives a child the right to receive assistance, but in the regions the mechanism of its implementation may not be very clearly described. As a result, we come to the conclusion that different practices are being applied on the ground," the Izvestia interlocutor pointed out.
The Russian Ministry of Health stressed that children left without parental care are provided with all types of necessary medical care, including medical rehabilitation. Last year, 458 children who are in orphanages received specialized medical care, including 55 children with disabilities.
— All children in need who are in orphanages have received high-tech assistance. All those in need received medical rehabilitation, including children with disabilities, the Ministry of Health told Izvestia.
Help is too far away.
Another common problem with such institutions is that they are too far from qualified medical care. For example, in the Trans-Baikal Territory, an orphanage for orphans with severe multiple developmental disabilities is located 450 km from the regional capital, and on Sakhalin, a boarding school is 460 km from the regional capital, Anastasia Zhdanova said. At the same time, she noted that the most difficult children often end up in such institutions: up to 10-20% of the total number of children recognized in the region as needing palliative care.
Ekaterina Pankova cited the situation in Petrovsk-Zabaikalsky as an example: even a routine examination of children with serious illnesses there required organizing a trip of almost 500 km. And the local district hospital lacked specialists.
A lot of work has been done at the boarding school to develop medical support and training of employees. But the problems persisted precisely because of the remoteness of the orphanage. Then, together with the local authorities and the Region of Care project, it was decided to change the approach to the placement of children with palliative status: they can no longer be sent to Petrovsk-Zabaikalsky, the children should be left within Chita, closer to medical organizations and specialists. And the foundation continues to accompany those who already live in a boarding school.
As Ekaterina Pankova explained, this is a very important decision, because time is of great importance when working with children with severe multiple developmental disabilities. If you miss it, the consequences can be irreversible. A representative of the Road of Life Foundation told the story of Stas, a boy who came to the fund's attention with a diagnosis of cerebral palsy.
— When we first met him during a medical visit, there was a boy with severe motor impairments in front of us. At the same time, he understood what was happening around him, sought to communicate, was interested in the world around him, but his physical abilities were extremely limited, and speech was practically lost," the expert recalled.
An examination and treatment were arranged for Stas in Moscow, but by that time his condition had noticeably worsened — and uncharacteristically for a child with cerebral palsy. Examinations have shown that the boy actually has a rare genetic disease that requires a completely different treatment. And there is a therapy for this disease. But, alas, by the time the correct diagnosis was established, the child had already developed severe, including irreversible motor disorders and bone deformities. Therapy relieved Stas' condition: He became more proficient with his hands, re-mastered some movements, and regained his speech. Now he is an active, sociable young man, but the consequences of the long-term progression of the disease no longer allow us to expect that he will be able to walk independently and fully serve himself.
What determines the success of the solution found?
While working in the regions, it became obvious that all systemic changes start with people, Ekaterina Pankova emphasized. Moreover, this person can be a governor who understands the importance of the problem, and an educator who sees that the usual ways of helping children are not enough, and is ready to make changes.
"In the Smolensk region, it all started with the director of an orphanage, who decided to tell the governor about the results of our joint work," the Izvestia interlocutor gave an example. — After that, he invited us to a conversation and offered to help develop specific measures that would provide the necessary support to the children of the region. Thus, the initiative of an employee of the institution turned into the interest of the regional leadership and joint work on system solutions.
In order for changes to occur, according to Anastasia Zhdanova, it is important to combine several conditions: the openness of the institution itself, the interest of its head, the willingness of regional authorities to support changes and the participation of NGOs that can consistently seek solutions to problems.
— One example is in Samara, where the work of the Evita Foundation to place children from boarding schools, including children with serious illnesses, into families became possible thanks to the active position of NGOs, the openness of the orphanage and the readiness of the regional Ministry of Social Protection. There is an initiative from below and support from the regional authorities," she said.
Working mechanisms can and should be replicated, Ekaterina Pankova said. This includes a system of in-depth medical examination, in which the child receives not just a medical report, but a specific route for further examination, treatment and follow-up; or a clear procedure for providing therapeutic nutrition and technical means of rehabilitation.
For the Road of Life, the main result of systemic changes is when successful practice ceases to depend on one caring person or the presence of a charitable foundation and becomes the usual way of working, said the head of the organization's program directorate.
Meanwhile, Irina Mersiyanova, director of the Center for Research on Civil Society and the Non-Profit Sector at the National Research University Higher School of Economics, stressed that it is important to consolidate decisions in a normative manner: a change will stick when it is written down in a specific document, and its financing is determined. If the hospital attendants, rehabilitologists, or palliative care were paid for by an NGO, then after her departure, the function most often disappears. The cases when the organization sought to transfer the function to the budget in advance, at least partially, turn out to be stable.
— Besides, a lot remains in the hands of the staff. Caregivers and nurses who have learned how to properly position a child, feed him, and recognize pain continue to do so without NGOs. But such skills are vulnerable due to staff turnover, and it is high in orphanages," warned the editorial interlocutor.
It is important that if an NGO leaves, the institution itself should not be closed from the outside world, she added. Anastasia Zhdanova clarified that the "Region of Care" is faced with such cases. Recently, the project's specialists came to the Kropotkin orphanage in the Krasnodar Territory and saw an announcement banning people who are not related to children from entering the institution.
— The boarding school showed from the entrance that it is a closed system. And this closed system has something to hide. There are a lot of problems that need to be solved. For example, according to medical documentation, children received meals with a caloric content of up to 5,000 calories per day, but dozens of children with severe protein and energy deficiencies were in the institution," the expert explained.
Often regional successes are based on one interested person in power: the minister, his deputy or the director of the institution, Irina Mersiyanova added. A change of leadership is one of the most common moments when "what has been achieved begins to fall apart."
Who can unite the efforts of the government and NGOs
In order to pool the resources of a person, his family, the state and NGOs in the world, they are increasingly resorting to the help of "case managers" or social coordinators, said Pavel Kantor, a lawyer at the legal group of the Center for Curative Pedagogy.
"The bottom line is that each recipient of assistance (at least in difficult and non—trivial situations) is assigned an individual specialist who is engaged in the search and attraction of resources in the specific situation of this person," he explained to Izvestia.
Such social coordinators are also appearing in Russian foundations: for example, within the Defenders of the Fatherland long-term care model.
In this case, an NGO may turn out to be almost a key link in social assistance. Pavel Kantor cited the example of the Dom with a Lighthouse children's hospice in Moscow. Despite the fact that the issue of providing palliative care for children in the capital has been normatively resolved, the city has no budget problems, and palliative services are working, it is the NGO that acts as an organization that can solve the immediate problem.
— For example, a family urgently needs an oxygen concentrator. Theoretically, according to the law, it should be there, money has been allocated for it, but for some reason it is not physically there - and without it, the child will die tomorrow. The Lighthouse House has such "case managers" who can solve this problem in a non-trivial way, find a hub and save the child. And no amount of financing can replace such work "At Home with a lighthouse," the lawyer emphasized.
However, it is important not only to improve regulations, but also to develop social services, Anastasia Zhdanova added. It is necessary to change the very idea of what a boarding school is and what role it should play in a person's life.
— In Russia, we still often perceive boarding schools as a special institution where a person can receive help, perhaps even better than at home. And this culture needs to be changed towards a culture of caring for loved ones and supporting human life in the family and community. Cultural change is a very long process. Regulatory decisions alone cannot provide it. But without this work, we will not be able to come to a situation where boarding school becomes a truly exceptional form of assistance," the expert concluded.
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