For almost two years now, the “Respite” project has been working in Novosibirsk - the first and so far the only one in the region. It is intended for parents with disabled children with various diseases - musculoskeletal disorders, cerebral palsy, mental disabilities, behavioral disorders, Down syndrome and other developmental disabilities.
The project is being developed on the basis of the Comprehensive Center for Social Adaptation of Disabled People. Its essence is the creation of a rehabilitation environment for disabled children and providing a “respite” for their parents, who are always close to their child. Teachers, speech therapists, defectologists, neurologists, and psychiatrists work with sick children at the center. Our correspondent learned more about the “Respite” program after visiting the Complex Center.
A little history
The Adaptation Center did not emerge out of nowhere; Even in war and post-war times, it was necessary to provide education and a profession to people who received physical illnesses. They needed the help of specialists to adapt to their new life and not feel thrown out of society. The modern building was built in 1970 and until recently housed an educational boarding school for the disabled. And in 2009, the institution became a Comprehensive Center providing social, medical and educational services. At first, the principles of work were the same: the emphasis was on young disabled people who needed to acquire the first skills to master a profession. But at the end of 2012, the attention of specialists was attracted by the parents of disabled children, who were often left alone with their problems. In collaboration with the Society of Disabled People of the Leninsky District (chairman Natalya Skaredov), the concept of the “Respite” project was developed.
Cornered
We understood - says Deputy Minister of Social Development of the Novosibirsk Region Galina Lysova,- that children with disorders of the musculoskeletal system, and even mental retardation, are a heavy burden for their parents. For such children, society is their home with four walls. But the mother needs to somehow resolve the issue with the child’s physical treatment, physical therapy, education, and contact the medical-pedagogical commission. Yes, and you need to live somehow! For the same medical examination, it is impossible for the mother to go to the hospital herself - she is tied to her home, to her disabled child. We saw that these mothers (unfortunately, they are mostly incomplete families) are our potential wards. We saw how they gave up on themselves and realized that something needed to be done.
Mothers needed a break, and children needed social adaptation. It was important for the children to communicate with their peers and equally important to receive help from doctors and teachers. And today we can already sum up the first results!
” Over the three years of the Center’s existence, 100 children received help. Two years of operation of the “Respite” program have shown how in demand it is, and most importantly, how useful it is. During this time, some of the children stood up on their feet using walkers, while others took a spoon and began to eat on their own. Someone learned to open a water tap, many gave up diapers, and this is also a great achievement.
Children have become less aggressive and more sociable. Specialists had to work hard to minimally adapt special children to life in society.
For its part, the management of the Center has done a lot for the comfort of children: the toilet for children in wheelchairs has its own section for them, and it has become possible to get to the assembly hall, where concerts and holidays are held, by lift.
” Parents, while their children were being treated at this center under the “Respite” program, were able to solve their problems. Some mothers got a job, others got a new specialty, someone was finally able to deal with the housing issue, there are mothers who managed to improve their personal lives and get married. Several families now have brothers and sisters of the Center's little guests - by the way, all of them are healthy children. That is, the family got the opportunity to develop and live a full, active life.
What's next?
But such rehabilitation at the Complex Center only takes six months. What to do next? Yes, mothers got jobs, their children began to develop dynamically. But how can these achievements be consolidated? After all, all this can come to naught again if the children are not taken care of...
” The Ministry of Social Development and the very center thought, consulted, talked with parents, and came to the conclusion that it is necessary to open places on a paid basis. Parents supported this idea because mothers had the opportunity to work.
Our rehabilitation course is 6 months, - says the director of the Integrated Center Larisa Pugacheva,- then, if parents want, they go for paid services. And then they can return to the budget again, if there is free space. We must give other children in need the opportunity to come to us.
”- The most complete range of services in the paid department is about 10 thousand rubles for 21 days. But parents don’t always use 21 days; sometimes they can bring a child, sometimes not, and on average it turns out to be about 7 thousand rubles a month. All our tariffs are approved by the government tariff department, the prices are quite reasonable. So far, the complex has 26 budget and 10 paid places, and this is quite enough.
But if the need arises, we will open new places. Today the department is designed for children aged 7 to 11 years. But parents are already worried, what will happen next to their grown children? Therefore, we are now thinking about creating places in the department for teenagers aged 12 - 14 years.
How to get to the Comprehensive Center?
Currently there are no difficulties in getting here. On the contrary, if earlier mothers were looking for such “shelters,” now the center’s leadership goes to the people.
Now they are not looking for us, but we are looking for them, - Larisa Pugacheva says. - We are here, we are ready to work, we are ready to accept new children, and we want people to know about us. Naturally, we will not allow queues - we will find a way out of the situation. Therefore, we are not afraid to become popular.
”- When we first opened (and it was August 1, 2013), and the first parents came, they were very concerned that someone else would come here and their rehabilitation period would be shortened. And they kept information about our institution so secret that they hid it even from their closest circle. But our goal is to reach as many families as possible with disabled children.
The center’s specialists themselves began to disseminate information: work with correctional schools, visit clinics, and attend social, medical, and psychological commissions. And now many people know about them and contact the Center directly. Employees of the institution supervise such people, suggest how to collect a package of necessary documents, and coordinate this process. After all, it shouldn’t happen that a parent wants to get there, but can’t. From January 1, the situation should change for the better, because it was in January that the new, 442nd law on social services came into force, according to which social protection authorities located in the territory where a disabled child lives must actively work with such children and their parents, send them to rehabilitation centers.
” From January 1, the Comprehensive Center began working directly with social support departments, talking about what services it can provide and who can come to it. And social protection, in turn, should help parents, push them to take care of their children, and set them up for a positive outcome.
“In our center,” Larisa Dmitrievna continues, “children from all districts and urban districts of the region can undergo rehabilitation under the “Respite” program. Now these are mainly guys from Leninsky, Kirovsky, Novosibirsk rural areas and the city of Ob.
For more information about the rehabilitation program, you can contact the Comprehensive Center for Adaptation of Persons with Disabilities by calling 314-79-72. Details are available on the Center's website.
And in order to collect the necessary documents, parents need to go to the social security authorities at their place of residence. There, a package of documents is compiled for the child, his personal file, and an individual rehabilitation program is created. The processing time takes about a week: after all, you do not have to undergo a medical examination, an extract from the child’s card is enough.
Photo from the site Comprehensive Center for Social Adaptation of Disabled People
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Mothers of severely disabled children sometimes do not rest for years, because they cannot leave their child either day or night. They are very exhausted, there is absolutely no one to replace them. Social recreation is the most desirable type of help for this category of parents.
Head physician of the children's mobile palliative service "Mercy" Ksenia Kovalenok
This was Olya’s second child, and she really wanted everything to work out this time. Her firstborn, seven-year-old Vanyusha, in medical parlance was “bedridden”: he did not move, he had to be fed through a tube. Olga had enough with him, and now she’s pregnant for the second time, and even in a single-parent family.
What kind of patience and courage one must have so as not to fall into despair in such a situation. Olga was somehow able to pull herself together and drive away despondency. Every morning I woke up with the thought that the Lord does not give me an exorbitant burden. If this happened, it means she is able to bear it.
The closer to the birth, the more insoluble the question seemed to be: with whom to leave the eldest, but completely defenseless Vanya. The staff (project) helped Olga out of a seemingly hopeless situation. In 2013, the Mercy medical center introduced a new program, “Social Respite,” just for such cases. Over the course of a year, a team of professional caregivers has been assembled here.
The chief physician of the children's mobile palliative service "Mercy" Ksenia Kovalenok happily talks about how successfully everything ended in this case: “Olya brought Vanya to the medical center and calmly left for the maternity hospital. We looked after him. Our ward had a completely healthy brother. Mom returned happy and took both children. We give mothers of disabled children the opportunity to relax and improve their health by temporarily transferring the care of their special child into the hands of our caregivers.”
But there may be several disabled people in a family, and then the help of “Social Respite” is almost a matter of a lifetime. Recently, a mother came to the center with disabled twins, very heavy and bedridden. Before this, my mother looked after them continuously, night and day, for many years. And for the first time in my life - and the children were already 11 years old - I was able to leave them for a while. It is very difficult for a person who has not been in her place to imagine what a mountain has fallen from her shoulders. Then this mother wrote a very touching letter of gratitude, but is that really the point...
“And,” says Ksenia Kovalenok, “there was a case when we had to help out a large family during forced repairs. A disabled child requires special conditions. Of course, we took him in for a month. During this time, they just managed to put the apartment in order.”
For us, this is home renovation - something from the realm of everyday routine. And for disabled people it is almost a matter of survival. For them, “living conditions” and “quality of life” are essentially synonymous. You can leave your child with the staff of the Mercy medical center without any doubt - he will fall into kind, caring hands. Usually they give it away for a month. During this time, a tired mother can do a mountain of urgent things: improve her health, renovate her apartment. Being disabled takes up most of your life, but all children, without exception, need attention.
What do we even know about mothers whose children are severely disabled? These women do not rest for years because they cannot leave their child day or night. They are very exhausted, there is absolutely no one to replace them. Social recreation is the most desirable type of help for this category of parents.
But leaving the child for a while, the mother must be sure that he will receive everything he needs. The hospital at the medical center has all the conditions for caring for seriously ill patients. There are specialists who regularly walk with them, engage in exercise therapy and general development. At home, without enough energy and time, mothers are not always able to do all this.
“For example, we can regularly wash our children in the bathroom,” says Ksenia Vladimirovna. - It would seem like a trifle. But many mothers are not able to do this regularly, simply because it is very physically difficult for them: the child is growing, and the parents have to constantly carry him. We have special devices, and the sisters cannot cope with such children alone.”
Actually, there are two types of “social recreation” in the center at Marfo-Mariinskaya. The first is the opportunity to bring the child to the 24-hour department. In this case, specialists from the children's mobile palliative service (the "Mercy" help service project) care for the child constantly while he lives in the respis on the territory of the Marfo-Mariinsky monastery. The second type of “social respite” is the opportunity to receive a caregiver at home. As a rule, they call her for several hours. Mothers use this option when they have an urgent need to go somewhere.
The cases are very different, including those of increased complexity. For example, large families with disabled people apply. It happens that a disabled child is cared for by his grandmother. For an elderly person this is a heavy cross to bear. Your own health problems constantly make themselves felt. Such people need special care. It happens that the mother herself has health problems. For some, caregivers visit twice a week, while others use the program’s services once a year. The mother of one of the wards was diagnosed with cancer and required long-term treatment in a hospital. She was given this opportunity. There is a father in the family, but the medical center provided a nurse for a whole month. Psychologists worked with the whole family at the same time. While the mother was in the hospital and a nurse was with the child, the family managed to find a permanent nanny.
If the mother herself needs treatment, they suggest placing the child in a medical center for the entire period. And then a woman can, for example, go to a sanatorium. The problem is that mothers are often afraid to leave seriously ill children with anyone for a long time. They are so accustomed to being side by side with their child around the clock that they cannot imagine any “understudy”. Even temporary. And this is already a psychological problem. In such cases, the mother is invited to stay in the hospital with the child or at home with a nurse: this makes it easier for her.
For many, contact with the center is like returning home. The atmosphere is almost homely. And close people here have more time to communicate, and what could be more important?
Is a project. You can support him by becoming.
Our “Respite” program runs on Sundays. Children, teenagers and young adults with special needs come to us for four hours and stay without their parents with our volunteers. The goal of “Respite” is to give parents a little time that they can spend only on themselves. Some kids are lucky enough to go to school or college, but mostly these are young people with very severe disabilities who are not accepted anywhere, so they sit at home all the time. For them, this is the only opportunity for communication and socialization, and for parents - to be without the child and relax at least 2 times a month.
The children are brought to the treatment center and gradually enter the playroom. It is clear that they missed each other and are glad to meet, they sit in a circle. Teacher Sasha takes the guitar and hands out musical instruments to the children: tambourines, maracas. At the “Circle” everyone greets each other, sings songs, then goes into the hall to sing and dance.
Robert does not reach the hall and remains standing on the landing. Bob is 18 years old; he has been studying at the Center for Clinical Practice since childhood. He has autism, he does not use speech and practically does not communicate with others. He seems to be in his own world, swaying, periodically screaming and listening to the echo. “Bob has difficulty walking through doors and moving from one room to another. He’s generally a very difficult person, it’s not easy to establish contact with him,” says volunteer Alina, “I’m not quite able to do this yet. Here, I’ll try to lure him with the sounds of the flute.”
Alina takes out a flute and plays a quiet melody. Bob stops swaying and freezes, takes a few quick steps and stops next to Alina, bends down and listens to the sounds of the flute. Then he screams something, as if answering the flute, and, just as suddenly, he turns around and returns back to the stairs. “It’s still important for Bob to come here. Although he does not directly participate in common life, he is still nearby and perceives it,” says Alina. You can see how happy he is when he meets Zhenya and Rita, whom he has known since childhood. For them it is an opportunity to communicate.
Bob lives with his grandmother, she has taken care of him since birth. Robert's grandmother says he has developed some social skills. At home, he learned to eat himself, brew his own food, and even wash the dishes. Robert is also a very good drawer.
The children and their companions gather for a walk around the territory of the Center. Some young people stay to help prepare lunch. “Here is Zhenya. When I first joined the group, I thought: how difficult it is to work with her. And now we have become friends, she is so beautiful, I love her very much,” says teacher Tanya. Zhenya is a very sensitive and gentle girl, she also loves Tanya, smiles at her, sometimes hugs her, walking hand in hand with Tanya around the Center for Curative Pedagogy gives her great pleasure. For Marriage's parents, "Respite" is the only opportunity to relax.
Lyuba goes for a walk around the territory of the center with volunteer Igor. It is clear that she recognizes herself as a young lady, she wants to listen to beautiful music and dance. Igor puts on music from the musical “Notre Dame de Paris” and they dance to it right on the street. Lyuba is completely happy.
Nastya is 17 years old, she lives with her mother. It’s very difficult for my mother to be with her: the girl is having a hard time going through adolescence. When Nastya is at home, she does not let her mother leave her side at all, she protests even if her mother closes the door to the bathroom. According to group leader Alena, mom is very tired of this situation. It is very important for both Nastya and her mother that they have time when they can be alone. One day Nastya’s mother looked very tired when she brought her daughter to us. After 4 hours, she returned for Nastya, very satisfied and calm, and said: “Thank you very much, at least I calmly washed my hair!” 
Varya is 16 years old, she has cerebral palsy, and she gets around in a wheelchair. She has been studying at the Center since childhood and is now studying at school. “I’m here as a volunteer. I know how everything works here and I explain to the other guys how to behave,” Varya says proudly. There are also several other adults with special needs who are quite well socialized; they come to the “Respite to help. This is very great for them, because they feel needed and really help with those guys who have more severe disabilities. In addition, this is also an opportunity for young people to socialize. For example, Andrei Druzhinin, with autism, comes to accompany him on the piano during the rehearsal conducted by our tireless Sasha at the very end of “Respite”. Sasha decided to stage a musical with the guys at the end of the year. The young people rehearse their roles with enthusiasm. We are looking forward to the premiere!
The "Respite" project is an after-school group for children from 3 to 16 years old with multiple developmental disorders (hereinafter referred to as MDD). The group is designed for 7 people and will work 3 days a week, 2 of which involve the stay of 3-5 children with a night shift, and the rest until 20:30, one day (Friday) the entire group stays until 21:30. In the city In Tolyatti, the "Respite" group had already been opened on the basis of one of the rehabilitation centers, but after 1.5 years of work, only 8 families wanted to use its services. There were other attempts, but they were all unsuccessful. After analyzing the situation, we launched a pilot project using funds received from holding a charity concert for a period of 3 months on the basis of one of the kindergarten groups. And already in the first 2 months, about 17 families took advantage of the group’s services, and there were significantly more people willing. Advantages of our project: - children are adapted, they are already familiar with the Center and teachers; -parents trust the Center’s teachers; -teachers have been trained in moving children with MSD, alternative communication, and trained in methods of care and feeding; -The center is well equipped and has its own kitchen. Only minor modifications to the sleep group are required. During the 9 months (from September to May) of the “Respite” group’s work, at least 40 families will be able to use its services, and a total of 777 services will be provided to them. This means that in 40 families raising children with multiple disabilities, the quality of life will improve, relationships will strengthen, and the overall climate in the family will improve.Goals
- Improving the quality of life and strengthening families raising children with disabilities by organizing the continuous and ongoing work of the “Respite” group
Tasks
- Organize an environment for the Respite group, including a games room, sleeping area, dining room and hygiene room.
- Organize the work of the "Respite" group, including the formation of a material and technical base, provision of personnel, food, and security.
- Create a database of games for children with MSD that can be played in the evening, with the support of a play therapist.
- Provide an opportunity for families raising children with MSD to attend the “Respite” group free of charge, including night shifts.
Justification of social significance
According to Rosstat for 2017, there are 10,235 disabled children in the Samara region, about 3,000 of them are children from the city. Tolyatti. According to experts, the number of children with multiple developmental disorders can reach 25% of the total number of disabled children. As a rule, such children cannot move independently, eat, they have visual impairments, every 2nd child experiences pain, they cannot do without constant help, and require care and attention 24 hours a day. Often, children with MSD experience sleep disturbances, and parents, while caring for the child, may themselves be left with little to no rest, which, of course, has a detrimental effect on health. On an ongoing basis, our Center visits 30 families, 30% of them are single-parent families. According to a survey of parents conducted in our center, 80% of families note complications in family relationships already 3 years after the birth of a child, citing general fatigue, the inability of spouses to spend time alone, as well as financial difficulties as the reason. Considering the fact that in the city of Togliatti in 2017 there were 25,551 marriages, and 13,774 divorces, we understand that it is especially important to support families raising children with disabilities, to give parents the opportunity to solve their pressing problems, to engage in treatment, and finally , just sleep and relax. Our project will give parents the opportunity to devote time to themselves, their spouses, and other children, which means it will help improve the quality of life and strengthen families raising children with disabilities. We firmly believe that just as our special children have the right to an ordinary childhood, so special parents have the right to an ordinary life, filled not only with treatment and solutions to endless problems, but also with simple joys.20.05.2016 10:19
Who should I leave the child with? This is a question faced by many parents who find themselves in a situation where they need to go to work, go to the hospital, or go away on business. It is especially difficult for families in which a child is raised by one parent or if a child with disabilities is growing up in the family.
The “Respite” program started at the Otradnoe family and childhood support resource center and was first addressed to families with children with disabilities. Recently, the program can be used by all families who find themselves in difficult life situations. Currently, the project is being implemented in 29 family and children support centers in different districts of Moscow.
“I am a Parent” met with the head of one of the departments of social support for families and children, Svetlana Pavlovna Uvarova, who shared the first results of the experiment.
Project goal and objectives
The “Respite” program has existed since 2012 and includes short-term groups for children from 9.00 to 13.00 on weekdays. This is not an alternative to either a kindergarten or a school, since the department of social support for families is not an educational institution. However, thanks to “Respite”, parents have the opportunity to leave their child under the supervision of specialists and. If a child has problems with behavior or psychological development, then they also try to solve them in groups. In addition, as part of the project, mothers and fathers themselves receive psychological support and learn to remain attentive parents even in difficult life situations.
Specialists at the Family Support Department admit that it is not true that people have an innate parental instinct. Sometimes you need to wake him up and explain the simplest things: how important it is to hug your child, listen to what worries him, and read a fairy tale at night.
How are classes going?
Depending on the situation within the program, you can leave the child in the group one or several times, or you can take him there constantly (for example, when the child cannot attend kindergarten or school due to health conditions). Psychologists and teachers will work with him and will be tasked with the following:
- psychological and social preparation of the child for school;
- development and acquisition of basic ideas about the world around us and what awaits the child when he starts school;
- creative activities through art therapy and the use of other techniques.
The child’s stay in the group begins with communication between specialists and parents to clarify individual characteristics and situations that occurred the day before or are occurring in general with the child. Next comes exercise, followed by developmental classes and group communication. Then creative studios, work with psychologists and speech therapists. An individual schedule is drawn up for each child, which includes the time for attending a particular class.
Here is just a partial list of activities that can be assigned to a child:
- art studio "Renaissance" - drawing therapy based on fine art;
- studio “Living Library” - bibliotherapy, where the main task of the specialist is the development of the child through cognition;
- music therapy - the development of the child’s psycho-emotional sphere through playing the guitar in the “Strings of the Soul” studio and choral singing in the “Rassvet” studio;
- studio "Rhythm" - development of dance and communication skills in the process of teaching dance;
- master classes in the Domovenok studio, when children learn to cook and this brings them great delight, and at the same time, the center’s specialists give advice on proper nutrition;
- sports section “Movement - Life”, where there is tennis, football, mini-football and physical training;
- carpentry and plumbing workshop, where children learn some simple everyday things.
All family specialists have higher education and are internally motivated to help people. In the course of their work, the department’s specialists improve their professional skills.
Who can participate in the program?
All families who are faced with problems that prevent them from caring for their child or taking him to kindergarten can participate in the program. In addition, parents of children with special needs, as well as children with problems with communication and behavior, can take a “respite”. Specialists from the department of social support for families help to collect a package of necessary documents and provide it to the department of social protection of the population of the region, where a decision is made about the family’s need to participate in the “Respite” program. After receiving permission, an agreement is concluded and work begins within the framework of an individual plan for the provision of social services for each family in accordance with the given issues.
Difficulties in implementing the program
“The result always depends on only one thing - parents’ awareness of their problem,” says the head of the department, Svetlana Pavlovna Uvarova. - Moms and dads sometimes assume that the child’s problem is his problem. There are situations when parents come and lay out the child’s problems, blaming only him for this and without thinking about their participation in their appearance. It was as if he lived and was raised on his own, and they had nothing to do with it. Not every parent can look at relationship issues from the other side. And this is the biggest difficulty, so the main task is to change the child-parent relationship, and not to remake the child.”
Vladlena Vorona