“Respite” - help for parents of special children. Who can participate in the program

Children with disabilities are increasingly being helped by both the state and society. But children grow up, and caring 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 and have no left for themselves. As a result, parents of such children serious health problems arise, emotional burnout, depression. After all, they are just can't leave the child to visit a doctor, go on business or just relax.

It's hard even full families. And often such an adult child has only his mother left. She does not go to a cafe, to a beauty salon, to the cinema or to visit. She has no time for herself, for friends and caring for older relatives, or simply for her health. While her friends are already babysitting their grandchildren, she feeds her adult child, helps him change clothes and take a shower, takes him for walks... And so - for decades, transferring 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 strength finally leaves?

The “Respite Plus” project has been working in St. Petersburg since 2016 and provides such parents with host family services. These are people who have undergone special training, who, for a minimal 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 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. On this moment Already 27 families with adults with disabilities have received assistance from the “Respite Plus” project.

The project is led by the St. Petersburg Association public associations parents of disabled children "GAOORDI". Any St. Petersburg family in which an adult with a disability lives can contact the association and receive help for free. A host family can care for an adult from 2 hours to 15 days a year - can be used in parts or completely (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 at the dacha and in the sanatorium.

As part of the Respite Plus project, host families are carefully selected. It's physical and mental healthy people who successfully passed the interview. All candidates are trained at the host family school, which is carried out by GAOORDI employees. The course is 72 hours long and covers the basics of caring for people with motor and sensory disabilities, autism spectrum disorders, Down syndrome, epilepsy and other developmental disabilities. Currently, 20 host families have been trained.

What do you need money for?

The “Need Help” fund raises money for the work of the “Respite Plus” project. Funds are needed to conduct training for potential host parents, pay for their labor, reimburse travel expenses, as well as for the salary of the project coordinator, who has to do literally everything - from planning the work of employees, selecting and assessing families, to surveying the conditions in which the wards live and checking diaries of host families, compilation of all types of reports and personal files of people with disabilities.

August

The project of the organization “Respite Plus” received the support of 128 people in August, 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 This Opportunity”. You can time it to coincide with 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 wards 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, the mission of which is to collect care products and consumables for the organization’s beneficiaries.

Help is at hand

In August to the project addressed Vasily K.,disabled personthird 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 being cared for by his old mother. It is already very difficult for a woman to physically help her adult son, who has 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 he himself feels needed.

In total, 72 people supported the project in June, 70 of them do this every month. The total amount collected was 22,202 rubles.

There were practically no visits in June, since the project coordinator went on vacation, and some families spent the summer at their dachas. The rest of the wards continue to receive help from 16 host families.

In total, 16 people met at the project during the first month of summer - all already acquaintances; Twice GAOORDI employees visited the families.

Mom can do anything

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

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 Integrated Center social adaptation 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; back in the military and post-war period it was necessary to provide education and a profession to people who received physical ailments. 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 the deputy minister social development Novosibirsk region Galina Lysova,- that children with a disorder 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 of physical treatment for the child, physical therapy, training, contact with the medical and 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 much it is in demand, 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 you don’t take care of the children...

” 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 comes out to 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 cover as much as possible more families where there are disabled children.

The center’s specialists themselves began to disseminate information: work with correctional schools, visit clinics, 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 in better side, 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, refer 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,” continues Larisa Dmitrievna, “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 to collect Required 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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Project "Respite" for adoptive parents

"Respite" is a project of the Change One Life charity foundation, created to support guardianship and adoptive families. It is aimed at preventing emotional burnout of adoptive parents and crisis situations in the family, as well as preventing secondary abandonment of adopted children.

In the project's boundaries "Respite" Guardians and adoptive parents can use the help of a babysitter or babysitter for free, which gives them the opportunity to take at least a short break from the daily chain of affairs, find some time for themselves, and increase their resourcefulness as a parent. Project partner: bbsit.ru agency.

Who can take part in the project:

A family living in Moscow or the immediate Moscow region and having one or more adopted children. Babysitting services are provided for no more than two children in one family at a time. The number of hours of one session with a babysitter is no less than 2 and no more than 4. The number of sessions is no more than 2 times a week and 8 times a month.

How a babysitter is selected:

The Foundation searches for a suitable babysitter on the website of the Project Partner, negotiates with him, pays for his services and provides information to the families of guardians/adoptive parents.

The Foundation is not responsible for the actions/inactions of the babysitter; responsibility for interaction with the babysitter lies with the family of guardians/adoptive parents.

We want to participate! What to do?

Please fill out the application form below. Additional questions can be asked to Ekaterina Petrova - [email protected].

Participating families

Hours of respite

Hour

News

The rate decision and official comment from the Federal Open Market Committee (FOMC) will be announced at 21:00 Moscow time. Analysts with a 95% probability say that the rate will increase by 0.25%; such a step will not come as a surprise to the market. More interesting are the comments of the Chairman of the Board of Governors of the Federal Reserve Jerome Powell about the regulator’s policy in the future, notes Freedom Finance analyst Alen Sabitov.

“On the one hand, US economic indicators indicate continued growth in inflation and a decline in unemployment, so the Fed can continue to raise rates at an accelerated pace in 2019. On the other hand, the level interest rates is approaching neutral, about 3%, and risks to economic growth are increasing. These factors may require the Fed to be more cautious and tone down its rhetoric," he said.

Experts note that such US foreign economic policy reduces investor interest in the American currency and at the same time weakens it. Growing tensions after a new round of mutual tariff restrictions between the United States and China, delaying decision-making on NAFTA will destabilize the dollar, says Associate Professor of the Department of Economic Theory of the Russian Economic University. G.V. Plekhanova Irina Komarova.

It is possible that high rates of economic growth, positive dynamics of wages and acceleration of inflation (2.2% in August with an annual target of 2%) will become the basis for a more optimistic base forecast for rates, the brokerage company IT Invest notes.

“In this case, you can count on the strengthening of the US dollar against the currencies of emerging markets. In our opinion, the official commentary of the FOMC will not undergo significant changes, and the political attitude of the American regulator will be characterized as “adaptive,” the broker predicts.

While waiting for comments from the US Federal Reserve, the Russian currency took a pause in its strengthening. The dollar exchange rate to the Russian currency increased to 65.87 rubles. For the currencies of developing countries, the Fed rate increase is negative news. However, given the cessation of foreign currency purchases for the Ministry of Finance, the ruble may fall in price somewhat, but will not suffer serious losses, says analyst Viktor Strekov.

"The ruble exchange rate will react more strongly to oil prices than to the expected Fed rate increase. Prices for " black gold"are at $81.5-82 per barrel of Brent. The gap between the Central Bank and the Federal Reserve rates will remain. If there are comments tonight about the tightening of the policy of the American regulator, it is quite possible that the Central Bank will continue to raise its rate, which will support the rate. A surge in volatility on the foreign exchange market when revising the Fed rate increase schedule in 2018 will be short-term in nature,” he believes.