Autonomous non-profit educational organization "comprehensive educational center for children with developmental disorders "solar circle"". Elizaveta Fafurdinova: social service "respite" keeps families from placing disabled people in boarding schools

Children with handicapped both the state and society are increasingly helping. But children grow up, and care for them falls only on the shoulders of their parents. A child with a disability at any age requires round-the-clock attention. Aged parents spend all their energy on caring for him, there is no longer any left for themselves. As a result, the parents of such children have serious health problems, emotional burnout, depression. After all, they are just can't leave the baby to visit a doctor, go on business or just relax.

It is difficult even for complete families. And often such an adult child has only a mother. She does not go to a cafe, to a beauty salon, to the cinema or to visit. She does not have time for herself, for friends and caring for older relatives, and simply for her health. While her friends are already nursing their grandchildren, she feeds her adult child, helps him change clothes and take a shower, takes him for walks ... And so - for decades, transplanting her 20 or 50-year-old sons or daughters from a stroller to a bed and back, lifting and lowering them “on yourself” 10 times a day. And what will happen to their child when the forces finally leave?

The Peredyshka Plus project has been operating in St. Petersburg since 2016 and provides such parents with host family services. These are people who have undergone special training, who, for a minimum remuneration from GAOORDI (150 rubles per hour), help with care at any time of the day, feed, conduct classes and go for walks. This helps parents to urgently go on business, go to the clinic or just relax. They get some free time, their physical and emotional state improves, and their quality of life improves. So far, 27 families with adults with disabilities have received assistance from the Respite Plus project.

The project is run by the St. Petersburg Association of Public Associations of Parents of Disabled Children "GAOORDI". Any St. Petersburg family with an adult with a disability can apply to the association and get help free of charge. The host family can care for an adult from 2 hours to 15 days a year - can be used in parts or in full (for example, regularly for several hours on weekends, or once for two weeks in a row). Practice shows that this number of days is enough to solve urgent problems or relax. However, parents themselves often do not want to leave their children for a long time. Care is possible at home or on the territory of the host family itself, as well as in the country house and in the sanatorium.

As part of the Respite Plus project, host families are carefully selected. These are physically and mentally healthy people who successfully passed the interview. All candidates are trained at the school of host families conducted by GAOORDI employees. The course is designed for 72 hours of classes and includes the basics of caring for people with motor and sensory disorders, autism spectrum disorders, Down syndrome, epilepsy and other developmental disabilities. So far, 20 host families have been trained.

What do you need money for

The Need Help Foundation is raising money for the Respite Plus project. Funds are needed to provide training for potential host parents, pay for their labor, reimbursement of travel expenses, as well as the salary of the project coordinator, who has to deal with literally everything - from planning the work of employees, selecting and evaluating families to surveying the conditions in which the wards live and checking diaries of host families, compilation of all types of reporting and personal files of people with disabilities.

August

The project of the organization "Respite Plus" in August received the support of 128 people, who togethermanaged to collect 62,142 rubles, of which 29,941 rubles are small donations.

You can help the project not only by making a donation, but alsocreating your own collection on our volunteer fundraising platform "Taking the opportunity". You can time it to a memorable event in your life or just to do a good deed with your friends.

In August, 27 wards (including one new one) received support from 21 host families. Since most of the students go on vacation in the summer and there is less work, the project coordinator also went on vacation.

In the last month of summer, Respite Plus launched the Rare But Equal Marathon, whose mission is to raise funds for care and Supplies for the subordinates of the organization.

Help is near

In August in the project Vasily K. contacted,person with a disabilitythe third group. The man offered Respite Plus his help. It turned out that he lives in the same area with the 43-year-old ward of the project, Mikhail M., who is cared for by an old mother. It is already very difficult for a woman to physically help her adult son, who is suffering from Duchenne muscular dystrophy. But the circumstances turned out very well: the family liked Vasily and has been working in the project since August, in particular, he gives Mikhail's mother a rest and feels himself needed.

June

In total, 72 people supported the project in June, 70 of them do it every month. The total amount of the collection amounted to 22,202 rubles.

In June, there were practically no visits, as the project coordinator went on vacation, and some families spend the summer in their dachas. The rest of the wards are still assisted by 16 host families.

In total, the first month of summer was met by 16 people at the project - all of them are already familiar; twice GAOORDI employees went to visit their families.

Mom can do anything

A. has Duchenne myodystrophy. He loves to spend time at the computer and most of the year he lives in the village of Solnechnoye, in a social dacha with an accessible environment. He moves in a wheelchair: not only his legs, but his hands are no longer very well obeyed. His back is bent, and A. himself is very thin, but he has a stylish haircut, and also wonderful parents who are doing a great job. But they also need rest, especially mom. She is constantly next to her son, because dad works. The organization's host family comes to Solnechnoye to be with the boy and give his mother a break.

20.05.2016 10:19

With whom to leave the child? This question is faced by many parents who find themselves in a situation where they need to go to work, go to the hospital or leave on business. It is especially difficult for families in which a child is brought up by one parent or if a child with disabilities grows up in the family.

The Respite program was launched at the Otradnoye family and childhood support resource center and was first addressed to families with children with disabilities. Since recently, the program can be used by all families who find themselves in a difficult life situation. At the moment, the project is being implemented in 29 family and child support centers in different parts of Moscow.

“I am a Parent” met with the head of one of the departments of social support for families and children Uvarova Svetlana Pavlovna, who shared the first results of the experiment.

The purpose and objectives of the project

The Respite program has existed since 2012 and includes groups of short stays for children from 9.00 to 13:00 on weekdays. This is not an alternative to either kindergarten or school, as the department of social support for families is not educational institution. However, thanks to the "Respite", parents get the opportunity to leave the child under the supervision of specialists and. If the child has behavioral problems or psychological development, then they are also tried to be solved in groups. In addition, mothers and fathers themselves receive psychological support within the framework of the project, and learn to remain attentive parents even in difficult life situations.

Specialists of the family support department admit: it is not true that the parental instinct in people is innate. Sometimes you need to wake him up and explain the seemingly simplest things: how important it is to hug your child, listen to what worries him, and read a fairy tale at night.

How are the classes going?

Depending on the situation within the program, you can leave the child in the group one or more times, or you can take him there all the time (for example, when the child cannot attend kindergarten or school due to health conditions). Psychologists and teachers will work with him, who will have the following tasks:

• psychological and social preparation of the child for school;
• development and acquisition of basic ideas about the world around and about what awaits the child with the start of schooling;
• creative activities through art therapy and the use of other techniques.

The stay of the child in the group begins with the communication of specialists with parents to clarify the individual characteristics and situations that occurred the day before or occur in general with the child. Next comes the exercise, after - classes of a developing plan and group communication. Then creative studios, work with psychologists and speech therapists. For each child, an individual schedule is drawn up, in which the time for attending a particular lesson is prescribed.

Here is just a non-exhaustive list of activities that can be assigned to a child:

• art studio "Renaissance" - drawing therapy based on fine arts;
• Studio "Living Library" - bibliotherapy, where the main task of a specialist is the development of a 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" - the development of dance and communication skills in the process of learning to dance;
• master classes in the studio "Domovenok", when children learn to cook and it delights them greatly, 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;
• a carpentry and locksmith workshop, where children learn some simple everyday things.

All family professionals have higher education and intrinsic motivation to help people. In the course of work, the specialists of the department improve their professional skills.

Who can participate in the program?

All families who have encountered problems that prevent them from sitting with a child or taking him to kindergarten can participate in the program. In addition, parents of children with disabilities, as well as children with communication and behavioral problems, can take a “breather”. Specialists of 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 district, where a decision is made on the need for the family to participate in the Respite program. After obtaining a permit, a contract is concluded and work begins within the framework of individual plan provision of social services for each family in accordance with the given problems.

Difficulties in implementing the program

“The result always depends on only one thing - the parents' awareness of their problem,” says the head of the department, Svetlana Pavlovna Uvarova. - Dads and moms sometimes assume that a child's problem is his problem. There are situations when parents come and lay out the problems of the child, blaming only him for this and not thinking about their participation in their appearance. As if he lived and was brought up on his own, and they have nothing to do with this. To look at the problems of relationships from the other side is not given to every parent. And this is the biggest difficulty, so the main task is to just change the parent-child relationship, and not to remake the child.

Vladlena Vorona

The Respite program takes place on Sundays. Children, teenagers and young people with special needs come to us for four hours and are left without parents with our volunteers. The purpose of Respite is to give parents a little time that they can spend only on themselves. Some guys are lucky: they attend school or college, but mostly they are young people with very severe disabilities who are not taken anywhere, so they stay at home all the time. For them, this is the only opportunity for communication and socialization, and for parents - to be without a child and relax at least 2 times a month.

The guys are brought to the CLP, they gradually enter the playroom. It can be seen that they are bored and are happy to meet, sit in a circle. The teacher Sasha takes a guitar, distributes musical instruments to the children: tambourines, maracas. On the "Circle" everyone greets each other, sing songs, then go to 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 in the CLP 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, sways, periodically screams and listens to the echo. “It is difficult for Bob to go through doors, to move from one room to another. In general, he is a very difficult person, it is not easy to establish contact with him, ”says volunteer Alina,“ I still don’t quite succeed in this. 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 something cries out, as if answering a flute, and, just as suddenly turning around, returns back to the stairs. “It’s still important for Bob to come here. Although he does not directly participate in the common life, he is still there, perceives it, ”Alina believes. It can be seen 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 been taking 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 and even wash the dishes. Robert is also very good at drawing.

Children with accompanying people are going for a walk around the territory of the Center. Some young people stay to help prepare dinner. “Here is Zhenya. When I first joined the group, I thought: how difficult it is 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 tender girl, she also loves Tanya, smiles at her, sometimes hugs her, walking hand in hand with Tanya around the Center for Curative Pedagogics gives her great pleasure. For Zhenya's parents, "Respite" is the only opportunity to relax.

Lyuba goes for a walk around the territory of the CLP together with volunteer Igor. It can be seen that she is aware of 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. Mom is very difficult with her: the girl has a hard time transitional age. When Nastya is at home, she does not let her mother go away from her at all, she protests, even if her mother closes the door to the bathroom. According to the head of the group Alena, my mother is very tired of this situation. Both Nastya and her mother - it is very important for both of them that they have time when they can be apart. Once Nastya's mother looked very tired when she brought her daughter to us. After 4 hours, she returned for Nastya very pleased 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 uses a wheelchair. She has been studying at the Center since childhood, now she is studying at school. “I am here as a volunteer. I know how everything works here and I explain to other guys how to behave, ”Varya says proudly. There are also a few adults with special needs who are quite well socialized, they come to the Respite to help. It's great for them, because they feel needed and really help with those guys who have more severe disabilities. In addition, for young people it is also an opportunity to communicate. For example, Andrei Druzhinin, with autism, comes to accompany the piano during a rehearsal conducted by our indefatigable Sasha at the very end of Respite. Sasha decided to stage a musical with the guys at the end of the year. Young people enthusiastically rehearse their roles. Looking forward to the premiere!

The Peredyshka project is an extended day care group for children from 3 to 16 years old with multiple developmental disorders (hereinafter referred to as MHD). 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 stay of the entire group until 21:30.
In the city of In Tolyatti, the Peredyshka group was already opened on the basis of one of the rehabilitation centers, but over 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 with funds received from a charity concert for a period of 3 months on the basis of one of the groups kindergarten. And already in the first 2 months, about 17 families used the services of the group, and there were much more applicants.
Benefits of our project:
-children are adapted, they are already familiar with the Center and teachers;
- parents trust the teachers of the Center;
-teachers were trained in the movement of children with MNR, alternative communication, trained in care and feeding methods;
-The center is well equipped, has its own kitchen. Only minor retrofitting of the sleeping group is required.
During the 9 months (from September to May) of the work of the "Peredyshka" group, at least 40 families will be able to use its services, in total 777 services will be provided to them.
And this means that in 40 families raising children with multiple disabilities, the quality of life will improve, relationships will strengthen, and the general climate in the family will improve.

Goals

1. Improving the quality of life and strengthening families raising children with disabilities by organizing the continuous and constant work of the Respite group

Tasks

1. Organize an environment for the Respite group, including a playroom, a place to sleep, a dining room and a hygiene room.
2. To organize the work of the Respite group, including the formation of a material and technical base, the provision of personnel, food, and security.
3. To create a database of games for children with MHD, desirable for holding in the evening, with the support of a play therapist.
4. Provide an opportunity for families where children with MNR are brought up to attend the Peredyshka group free of charge, including night shifts.

Substantiation of social significance

According to Rosstat for 2017, there are 10,235 children with disabilities 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 children with disabilities. As a rule, such children cannot move independently, eat food, they have visual impairments, every 2nd child experiences pain, they cannot do without constant help, they require care and attention 24 hours a day. Often, children with MHD have a sleep disorder, and parents, caring for a child, themselves can remain with little or no rest, which, of course, adversely affects health. Our Center is regularly visited by 30 families, 30% of them are single-parent families. According to a survey of parents conducted in our center, 80% of families note a complication in family relationships already 3 years after the birth of the child, citing general fatigue, the inability to spend time alone with the spouses, as well as financial difficulties. Considering the fact that in 2017 in the city of Togliatti 25551 marriages were concluded, and 13774 divorces were committed, we understand that it is especially important to support families where children with disabilities are brought up, to give parents the opportunity to solve their pressing problems, to engage in treatment, and finally just sleep and rest. 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 a normal childhood, so special parents have the right to a normal life filled not only with treatment and solving endless problems, but also with simple pleasures.

It has been almost two years now that the Respite project has been operating in Novosibirsk - the first and so far the only one in the region. It is intended for parents who have disabled children with various diseases - disorders of the musculoskeletal system, cerebral palsy, mental insufficiency, behavioral disorders, Down's syndrome and other developmental features.

The project is being developed on the basis of the Comprehensive Center for Social Adaptation of the Disabled. Its essence is the creation of a rehabilitation environment for children with disabilities and the provision of a "respite" for their parents, who are inextricably close to their child. Teachers, speech therapists, defectologists, neurologists, and psychiatrists work with sick children in the center. Our correspondent learned more about the Respite program after visiting the Complex Center.

A bit of history

The Adaptation Center did not originate on empty place; even in the war and post-war times, it was necessary to give education and a profession to people who received physical ailments. They needed the help of specialists to adapt to a new life, and not feel thrown out of society. The modern building was built in 1970 and until recently it 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 focus was on young disabled people who need to get the first skills to master the 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 cooperation with the Society of the Disabled of the Leninsky District (chairman Natalya Skaredov), the concept of the Respite project was developed.

Cornered

We understood - tells the Deputy Minister of Social Development of the Novosibirsk Region Galina Lysova,- that children with a violation of the musculoskeletal system, and even mental retardation- a heavy burden for their parents. The society for such children is their house with four walls. But the mother needs to somehow resolve the issue with the child's physiotherapy, physiotherapy exercises, training, contact with the medical and pedagogical commission. And yes, you have to live somehow! It is impossible for mommy herself to go to the same medical examination, to the hospital - she is tied to the house, to a disabled child. We saw that these mothers (unfortunately, they are mostly incomplete families) - our potential wards. We saw how they gave up on themselves, and understood that something had to be done.

Moms needed a break, and children needed social adaptation. It was important for the children to communicate with their peers and it was equally important to get the help of doctors and teachers. And today we can already sum up the first results!

” During the three years of the Center's existence, 100 children received help. Two years of work of the Respite program have shown how much it is in demand, and most importantly, how useful it is. Some of the children during this time got up on their feet, using a walker, someone took a spoon and began to eat on their own. Someone has learned how to open a tap with water, many have abandoned diapers, and this is also a great achievement.

Children became 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 the children: a separate department has appeared for them in the toilet for wheelchair users, and it has become possible to get into the assembly hall, where concerts and holidays are held, by lift.

” Parents while their children were engaged in this center under the program "Respite", were able to solve their problems. Some mothers got a job, others received a new specialty, someone was finally able to deal with the housing issue, there are mothers who managed to establish personal life and get married. Brothers and sisters of the little guests of the Center appeared in several families - by the way, all healthy children. That is, the family got the opportunity to develop, to live a full-fledged active life.

What's next?

But such rehabilitation in the Complex Center takes only half a year. And how to be further? Yes, moms got a job, their children have a dynamic development. But how can these achievements be consolidated? After all, all this can again come to naught if children are not taken care of ...

” The Ministry of Social Development and the center itself 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, since mothers had the opportunity to work.

We have a rehabilitation course of 6 months, - says the director of the Complex Center Larisa Pugacheva,- then, if parents want, they go to a paid service. And then they can return to the budget again, if there is free space. After all, we must give the opportunity to come to us and other needy children.

”- The most complete set of services in a paid branch is about 10 thousand rubles for 21 days. But parents do not always use 21 days, sometimes they can bring a child, and sometimes not, and on average it turns out 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 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, but what will happen next with their grown children? Therefore, now we are thinking about creating places for teenagers aged 12-14 in the department.

How to get to the Complex Center?

Currently, there are no difficulties in getting here. On the contrary, if mothers used to look for such “shelters”, now the leadership of the center goes to the people.

Now they are not looking for us, but we are looking for them, - says Larisa Pugacheva. - We are here, we are ready to work, we are ready to accept new children, and we want to be known about us. Queues, of course, are not allowed - we will find a way out. Therefore, we are not afraid to become popular.

”- When we first opened (and it was August 1, 2013), and the first parents went, they were very worried that someone would come here again and they would shorten the rehabilitation period. And they kept the information about our institution so tightly a secret that they hid it even from their closest associates. But our goal is to reach as many families with disabled children as possible.

The specialists of the center themselves began to disseminate information: to work with correctional schools, visit polyclinics, social-medical-psychological commissions. And now many people know about them and apply directly to the Center. Employees of the institution supervise such people, suggest how to collect a package of necessary documents, and coordinate this process. After all, such that the parent wanted to get to, but could not, should not be. 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, who can come to it. And social protection, in turn, should help parents, push them to take care of the child, set them up for a positive result.

In our center, - continues Larisa Dmitrievna, - children from all districts and urban districts of the region can undergo rehabilitation under the Respite program. Now these are mostly guys from the Leninsky, Kirovsky, Novosibirsk rural areas and the city of Ob.

For getting additional information about the rehabilitation program, you can contact the Comprehensive Center for the Adaptation of the Disabled by calling 314-79-72. Details are on the Center's website.

And to collect Required documents, parents need to go to the social security authorities at the place of residence. There, a package of documents for the child is formed, his personal file is created individual program rehabilitation. In terms of time, registration takes about a week: after all, you do not have to go through medical examination, an extract from the child's card is sufficient.

Photo from the site Complex Center for Social Adaptation of the Disabled

Do you think this information is important?