Lida Moniava: "Boarding schools are a problem in Russia and it can be solved!"

Not so long ago, Novye Izvestia spoke about the extremely sad state of affairs in the country's psycho-neurological boarding schools, commenting on the publication on this topic by journalist Yelena Kostyuchenko in Novaya Gazeta. In this regard, it is logical to ask the question: how to solve this problem? According to the public figure Lida Moniava, this can (and should) be done by acting simultaneously in two directions: engaging in prevention, so that fewer and fewer new patients appear for such institutions; and creating alternative forms of living, thereby bringing patients from boarding schools to normal conditions.

Moniava, who herself took up a disabled child, explains these two points in detail in her publication.

1. How to prevent people from going to boarding schools?

- Create early assistance services. So that the maternity hospital does not advise the mother to abandon the child - "such children are not for home, you cannot cope, he needs a special institution." On the contrary, they taught and supported that parents take the child home and have support at home - how to care for them, how to alleviate the condition, how to develop such a special child.

- To increase the size of the disability pension. Agree, it is unfair that a boarding school in Moscow receives 250 thousand rubles for a child, a guardian 60 thousand rubles, and parents no more than 20 thousand? In Moscow. In the regions it is less. (If you allocate more money to parents, for example, as well as to guardians, there are more chances that they will leave the child in the family, because there will be resources to take care of him. And better also as a boarding school.) The quality of assistance to a child in a family is still higher than in a boarding school.

- Eliminate the difference in payments between children and adults with disabilities. It is very unfair that at the age of 18, payments are significantly reduced. For example, my guardian Kolya receives 90 thousand rubles a month along with alimony. When Kolya turns 18, I will receive 20 thousand a month. 4.5 times less! But with age, the problems of people with disabilities are not corrected, but on the contrary are aggravated. At the very least, people become heavier in weight and harder to care for. Help in caring for disabled adults should not be less, but at least as well, or even more, than for a child!

- Create a nanny service. In Europe, the USA, people with disabilities are entitled to hours of babysitting / assistant assistance. Someone 2 hours a day. And someone, for example, completely immobilized people on mechanical ventilation - 24 hours a day. It is much cheaper to give a family a nanny at home than to maintain an entire institution for the care of such children / adults.

- Make the environment accessible. When you and your relative are unable to leave the entrance, cross the street, drive a vehicle, go to the toilet - this is very traumatic and restricts the whole family. You can't go to the park for a walk together, you can't go to a cinema-cafe. This means that not only the disabled person remains at home, but also the members of his family, who are caring for him.

- Access to education and employment. People with disabilities should be able to spend time outside the home in a team. In childhood, this is a kindergarten, school, then college, workshops, workplaces or a day center. Depends on the capabilities and needs of the person, but the main thing is that there must be some place and society other than home and family, where a person is regularly expected.

- Establish the provision of technical means and medical equipment at home. Kolya can walk and ride everywhere, because he has an individually made stroller for 700 thousand. If he used what the state gives out (standard wheelchairs for 130 thousand at best), Kolya would not be able to leave the house. It is imperative that a person has individuality! selected funds. A bed with height adjustment (we bought it for Colin's pension, but in an amicable way, it should be issued by the state), a lift for moving, a chaise longue for bathing a stroller, etc. Kolya received medical equipment six months later. Well, the hospice donated all this in 1 week with the money of philanthropists, but if we do not establish operational support from the state, people will live for six months in hospitals (a lot of money for bed-days!) Only because they are waiting for the delivery of equipment.

- Establish the provision of medical nutrition. Children under 18 years of age are still entitled to medical nutrition (very little, which is similar in less than 30% of cases). And from the age of 18, the Government of the Russian Federation does not provide its citizens with medical nutrition in principle. Therefore, people in orphanages look like they are from Buchenwald. And at home it is unrealistic for parents to pull payment for medicinal mixtures on their own. For example, Kolino medical food costs 60 thousand rubles and is not provided by the state. We have money to pay for this, so Kolya is of normal weight. How many families with disabled people in Russia can spend 60 thousand a month on medical nutrition? Medical nutrition is not a porridge with a cutlet, but a medicinal mixture, which should be included in the list of vital and essential medicines. But for some reason it is not included.

2. What alternatives to the boarding school can there be?

- Return to home. Many of the inmates of the boarding schools actually have housing. For example, Roma, who lived in a boarding school for several years, and now lives with the hospice employee Diana - it turned out that Roma has an apartment from his mother. The apartment was empty all this time. And other guys have housing where they are registered - and could live there or receive benefits from the sale or rent of this part of the housing.

- Social housing. In Russia there are programs to provide housing for orphans. For some reason, this program does not work for all orphans, but only for the strongest. A whole commission assesses whether a person can live on his own or not? And it depends on this whether they will give him an apartment or not? This is a mistake, it must be assessed cannot / cannot, but how many hours of what help a person will need. Someone will be able to live in an apartment by themselves, someone with an assistant once a week, someone with an assistant 24 hours a day. Everyone can! It's just that everyone needs a different degree of support. All orphans have the right to their own apartment for a long time. And not only from those who know how much milk costs in the store - now they are taking away who is entitled and who is not.

- There must be distributed custody. Someone may decide to take responsibility for medicine, someone for finances, someone for care, etc. Now you either take full responsibility entirely - you live together, you are responsible for life, health, money, etc. Or are you nobody. But rarely is anyone ready to shoulder the WHOLE responsibility. A person has a much better chance if the guardians could take on one aspect, and not all at once.

- We need to do more projects where you can take a person from the boarding school. Apartments and houses of accompanying accommodation, etc. In a small place, the quality of care will always be greater than in a large one.

Boarding schools are a problem in Russia and it can be solved!