Philanthropists are well versed in the problems of Russians, but have not become part of the new government

"Medusa" asked what they would do first of all on the place of ministers

On January 21, the government was announced with new ministers of labor and social protection, education, healthcare and other areas, where charitable foundations are actively working. Often, NPOs perform functions that are formally assigned to the state, but are not always implemented in practice. For example, this applies to the treatment of cancer or palliative care. Meduzacare asked the heads of large charitable foundations that they would do primarily on the site of ministers.

This article is part of our Meduzacare philanthropist support program. In February 2020, it is dedicated to neuropsychiatric boarding schools. All materials can be read on a special screen .

Grigory Sverdlin, Director of Assistance Organization "Overnight"

First of all, I would have changed the registration system (it is being managed by the Ministry of Internal Affairs). Today, our rights are not even attached to the passport, but to the stamp on registration. You can get it only if you are the owner of the real estate or you have the consent of the owner. Many people have neither one nor the other. And it’s not only about the homeless.

If there is no stamp on registration, then many problems immediately arise: you are not hired, no social support measures are applied to you - be it preferential travel for pensioners or benefits for children. With the construction of children in school and kindergarten, there will also be great difficulties. As a result, many people are precisely because of the existing registration system are on the street. There is no registration-I have to work "in black". The employer deceived - and now you are homeless.

The exit could be the introduction of the third form of registration - at the place of actual residence. In order for a passport to come to the UVM of the Ministry of Internal Affairs (the Office for Migration of the Ministry of the Interior) and submit an application with a request to register you, for example, in the city of Murmansk. This certificate would not indicate the address of the house or apartment, but just the city of Murmansk.

Lisa Oleskin, Director of the Fund for Assistance to the elderly and people with disabilities "old age in joy"

I would become the Minister of Labor and Social Protection, although it is very far from the thought that even the best minister of a single department will be able to find a solution that will become a panacea. But there are three things that are definitely needed to organize the care and help of the elderly and people with disabilities.

First. It is important that the Ministry of Labor, the Ministry of Health, the Ministry of Education and the Ministry of Culture combine efforts. In the bureaucratic language, this is called interdepartmental interaction, and it is always very difficult. People will not live easier if the social worker helps, but there will be no medical care. Or vice versa.

Second. It is necessary that these ministries correctly set the goals of their work. Completed from performance indicators and optimization to indicators of the quality of life of people. So far, we do not have enough social workers, doctors, teachers and other specialists who were reduced or not hired to fulfill the set KPI.

Third. It is necessary that the ministries evade the generation of a large number of projects that are not related to each other on certain problems that now work as patches. At the same time, these projects are often duplicated or contradict each other, and at the same time everyone requires resources and financing. For example, one of the painful situations that developed last year in the regions: the lines in neuropsychiatric boarding schools ( PNI) were closed because the regions were already beginning to reform institutions. People were refused places, they stayed at home, although there was no help there for them.

Projects should be seamless and continuated. It is not good to organize help up to 18 years and not think what will happen later. It is not good to support the elderly, in need of outside help in nursing homes, and not to provide sufficient support at home. It is impossible to allocate funds for the construction of PNI without determining the real need for boarding schools.

Avdotya Smirnova, President of the Fund for Assistance to Solving Autism of Autism in Russia "Exit"

At least four ministries influence the sphere of our activity. This is the Ministry of Science and Higher Education, the Ministry of Health, the Ministry of Education and the Ministry of Labor and Social Protection. As a Minister of Science and Higher Education, I would immediately give an order to announce a grant competition for a scientific team, which will draw up a register of methods and practices of assistance to people with an autistic spectrum disorder (RAS) with the greatest number of scientific evidence in the world. As a Minister of Education, I would make the topic of inclusion of children with mental characteristics mandatory for all national projects related to education. As a Minister of Health, I would immediately order to rewrite the chapter about RAS in the national leadership of psychiatry in accordance with modern world ideas and rely in all further actions on them. As the Minister of Labor and Social Protection, I would contribute to the adoption of a law on distributed custody and maintain the development of all forms of residence representing an alternative to PNI.

Pavel Greenberg, Executive Director of the ADVITAS cancer Fund for Assistance

It is worth starting with the compilation of clear lists of what medical manipulations the federal budget pays in full, for which regional, where co -financing and in what shares are needed, and for what the patient will have to pay himself. Plus - in what terms the help should be provided. All this should be calculated based on clinical recommendations, patient registers and budget capabilities. These lists should receive the status of laws, and officials must bear personal liability for their violation. It is very useful to figure out what kind of help the state takes upon itself, and which is not to stop lying about free medicine.

In addition, Russia, of course, needs to equalize the availability of medical care in different regions. For example, if we talk about bone marrow transplantation (a priority direction for us), it is necessary to have at least one full -fledged center that is engaged in such operations, in each federal district. It is not normal when people from the Far East should fly for each stage of treatment and checks to St. Petersburg and these flights are not compensated to the patient.

Mitya Aleshkovsky, Chairman of the Council of the Foundation for the Development of Charity in Russia "Need help"

In Russia, it would not hurt to create a Ministry of Development of Civil Institutes and Civil Society. And I would gladly lead him. You need to start with which institutions are vital for the full development and functioning of our country. These are human rights, research, educational, medical organizations - those who help solve social problems from different parties. I would look at how to make these organizations more stable, I would support them. After that, I would create conditions for the emergence of new public institutions. That is, the first is to solve pressing problems, to support what is. And then to form an environment in which society would create new effective institutions that affect the social situation in the regions. For example, not in all regions there is where to contact if you are sick with cancer.

A practical step that can be taken with the help of just one law is a tax deduction for business for participation in charity. In many developed countries, this law is the main driver for the development of the non -profit sector. And our business has no economic incentives to engage in charity, which means that social problems do not receive decent funding from business structures. For individuals, you can also make tax deductions. In Poland, there is a “one percent of tax” program, thanks to which a private donor can donate one percent of taxes in a charity organization. This helps to develop not so much charity as society itself: people feel involvement in solving social problems.

In addition, our country needs a national system of rating of charitable foundations. Today there are several verifiers on the market, but not one of them is accepted as a basic one. If the bank wants to help a charitable organization, he does not know where to get a reliable list.

And the last, in the long run. In America there are more than 900 management programs in the field of NPOs, and in Russia - the cat cried. We have about one and a half million people work in a non -profit sector, but there is simply nowhere to get education.

Elena Alshanskaya, Head of the Volunteers Charitable Fund to help orphans

The Ministry of Social Protection is the largest influence on the sphere of our activity. What would I do in the first place? She conducted a serious audit of the social sphere. There is not so little money there now, but most is spent pointlessly. Huge, one thousand square meters, column halls of veterans houses, where these same veterans are good if there are twice a year. Orphanages, where adults are twice as many as children, and the maintenance of one child per month can cost the state 100-200 thousand rubles, and only a small part is spent on the child himself. For such money, you can solve the problems of a dozen families.

Of course, it is necessary to change the approach to training personnel, their salaries, tasks and the order of work. It is necessary that people in the social sphere be professionals, but not theorists, but by practitioners, so that their training is based on first of all a value approach. Respectfully to each recipient of help, with the understanding that any person is the best expert in his life. And the main task is to hear him, see his resources, help him live as much as possible, relying on his strengths and receiving support where there is a shortage.

Maria Lezhneva, Director of the Association "Well -Being of Animals"

Our specialized ministry is the Ministry of Nature Management. Now the problem of hopeless animals is solved in the Department of Development of specially protected natural territories, but soon they promise to make a separate department.

I would definitely send employees to their working points at least once every six months, because many officials have never seen animal shelters or were not in natural reserves, and from this problem in work - not from anger, but from ignorance. In the fight against ignorance, I would also oblige officials to constantly undergo training for compliance with modern legislation and scientific research. Well, we will be honest, together from the Ministry of Culture, I would forbid circuses with animals.

Anastasia Kaflanova, director

In case of blood diseases, it is important to quickly make a diagnosis. To detect the disease at an early stage, it is necessary to increase the oncunality of the first link and therapists. For weeks and even months, patients with leukemia are treated with the therapist from SARS. Although it will help to identify it in a timely assigned general blood test.

We need to change the law on purchases. To simplify the procedure for undergoing clinical studies of new and not yet registered drugs. To pay increased attention to clinical research in countries with high treatment standards: Switzerland, USA. And also create a reserve of drugs at the level of federal centers.

It is necessary to accompany the patient at all stages of treatment. This requires a specialized team of specialists. So that, for example, after chemotherapy, a radiologist is immediately connected to treatment. We need a system that would include psychological, nutritional, rehabilitation and other assistance from different specialists to patients and their families. Now this is almost not paid to attention. There is no psychologist in federal blades. A person who had just made a difficult diagnosis is left alone with emotions and illness.

In the framework of oncohematology, you need a register of patients who have already passed the bone marrow transplantation and are on outpatient treatment. In order for doctors who conducted transplantation to observe their patients and quickly respond to changes in their condition.

What expenses should be included in the compulsory medical insurance? Search and workpiece of the bone marrow transplant. Now it falls on the shoulders of patients and their families. The workpiece of the transplant from an unrealistic donor from a foreign register costs about a million rubles. Patients, especially adult men, often do not receive bone marrow transplantation. They say that they are not ready to sell the apartment and leave their children on the street.

In the compulsory medical insurance, it is also necessary to include compensation for the costs of tickets to the place of treatment and vice versa. Expand the list of studies that are included in the compulsory medical insurance. To include in the compulsory medical insurance the preservation of the fertility of cancer patients is a question that is not rising at all.

At the moment, the availability of bone marrow transplantation in Russia is 30%. These are 30 out of 100 patients. To increase the availability of transplantation, competent specialists are needed and an increase in the number of centers competent in such an operation. Now there are only eleven in seven regions of the country.

Alexandra Sivtsova

The editors thank for the idea of ​​the material of the director of the Foundation for the True with Leukemia Anastasia Kaflanov