Disabled Economy: Children are massively denied disability extensions. Land and the right to additional living space

Disability benefits for children 2019 are social benefits and additional types assistance that is due to parents whose children have health problems and they have been assigned a certain disability group.

List of diseases for establishing disability for children in 2019

According to the provision of Article 1 of the Law "On the Social Protection of the Disabled in the Russian Federation" No. 181-FZ on the assignment of disability to children in 2019, a child with a health disorder associated with a disorder of body functions is considered a disabled person.

Regardless of what disease the child suffers from and at what stage the development of the pathology is, according to this law, in 2019 on the establishment of disability for children, he can receive this category at the age of 18 if he fulfills one of these points:

1. There is a persistent disorder normal functioning body caused by injury, childbirth or illness.
2. There is no opportunity to live, move, talk, study, work and perform actions aimed at taking care of yourself.
3. There is a need for social protection from the state.

The category of disability is not assigned forever, but on certain period. According to federal law, in Russia, disability can be assigned for 1 year, 2 years and 16 years. Then you will need to re-pass the examination in order to confirm the disability. The period when a child belongs to this category of citizens, he has the right to receive a social pension, the amount of which is indexed every year.

• mental disorders;
• violation of the sensory system of the body;
• external physical deformities;
• lack of normal functioning of language and speech;
• violation of body functions associated with the possibility of movement;
• disrupted work of the digestive organs, heart, blood vessels, respiratory, endocrine, circulatory, immune systems;
• diseases associated with impaired urinary function;
• skin dysfunction and related diseases.

Groups for assigning disabilities to children in accordance with the Federal Law 2019

Currently, according to the legislation of the Russian Federation, there are such categories of disability:

• I group;
• II group;
• III group.

First group- one of the most difficult categories of disability. Its assignment is carried out only in case of a severe disruption of the functioning human body. As a rule, disabled people of the I group in Everyday life cannot do without the help of other people.

The first group is usually assigned for such violations:

• complete or partial absence of organs of vision;
• hereditary or congenital diseases that severely damaged the work of the central nervous system;
• absence lower extremities;
• hearing damage of 80% or more.

The first group is also assigned for other, equally serious diseases.

Group II disabled are children who can perform minimal self-care activities without the help of other people, perhaps with the use of special equipment. The list of such disorders for which this group can be assigned usually consists of diseases such as:

• cirrhosis of the liver;
• violations of the organs of vision;
• paralysis of the lower extremities;
• fistula;
• hip disarticulation;
• the presence in the body of one lung or pulmonary insufficiency of the second degree.

Group III disability is often assigned to children who have limitations due to previous illnesses and injuries. In the future, persons belonging to this category of citizens of the Russian Federation will not have special restrictions in their labor activity, and will receive a salary at the level of other employees, but they are entitled to state social assistance and material support. Disabled people of the 3rd group are considered to be children with such health problems:

• speech disorders;
• minor mental disorders;
• pulmonary tuberculosis;
• sensory disturbances;
• minor manifestations of physical deformity.

Assignment of disability in 2019 to children with diabetes and clubfoot

In case of disability, children with diabetes in 2019 may be assigned the first or second group, depending on the severity of the disease. First of all, social assistance and benefits for diabetic children are aimed at providing this category of citizens with all the necessary medicines.

Disability for clubfoot in children in 2019 is assigned to a child based on the presence of defects and deformities of the lower limb. To do this, you must undergo a medical examination and obtain a conclusion from a surgeon and an orthopedist. With clubfoot, a child may have a 2 or 3 disability group.

Types of social assistance to disabled children

Disabled children are a special category of children who need care not only from close people and society, but also from the state. Disability payments to a child in 2019 are made to about 550,000 children falling into this category of Russian citizens.

In 2019, the Russian Federation provides for the following types of social assistance for disabled children who are citizens of the Russian Federation:

• monthly charges;
• benefits provided by the Labor Code;
• benefits related to housing issues;
• transportation benefits;
• allowances to ensure the upbringing and further education of children;
• benefits for treatment, sanatorium rest;
• tax incentives.

According to the law on disability, children are entitled to a social state pension in 2019. For this year, the following amounts of financial assistance have been established for parents or guardians of disabled children:

• disabled since childhood of the 1st group - 10,376 rubles per month;
• disabled since childhood of the 2nd group, as well as citizens who have received a disability of the 1st group - 8,647 rubles per month;
• disabled people of the 2nd group - 4,323 rubles per month;
• disabled people of the 3rd group - 3,675 rubles per month.

In addition, parents or guardians of children with disabilities falling into this category of Russian citizens who care for them receive material compensation. The amount of such financial assistance is 60% of the official minimum wage.

In addition, persons who care for a child are entitled to the following monetary payments:

• 5,500 rubles - to a parent or guardian;
• 1,200 rubles - to other categories of people who care for a child with disabilities.

Benefits for families with disabled children in 2019

Not only pensions in the form of monthly payments are due to citizens of the Russian Federation. Families of children with disabilities in 2019 can count on the following benefits:

• benefits for utility bills - 50%;
• privilege for telephone communication - 50%;
• the mother of a disabled child who has not yet reached the age of 16 has the right to work part-time or a week;
• the organization does not have the right to refuse the mother of such children employment and to underestimate wages;
• the organization, on its own initiative, does not have the right to dismiss the mother of a disabled child;
• one of the parents or guardian is entitled to an additional 4 days off per month;
• free travel to public transport citywide or natural communication;
• a permanent discount of 50% on all types of transport, its effect applies to the period from October 1 to May 15 of each year;
• priority enrollment in kindergarten if possible, visit him for health reasons;
• exemption of parents from paying for kindergarten services;
• the priority right to enroll in a university if the necessary quotas are provided and the entrance exams are successfully passed;
• free receipt of prescription drugs prescribed by the attending physician;
• free receipt of prostheses and other orthopedic products;
• obtaining a sanatorium voucher for a child and one accompanying person.

Establishment and extension of disability for a child in 2019

The establishment and extension of disability for a child in 2019 is carried out by the medical and social expert commission - MSEK. The procedure is carried out in one of the following ways:

1. After the diagnosis is made and the course of treatment has been completed, the doctors themselves recommend the patient's parents to receive a disability group and send him to MSEC.
2. Parents or guardians of the child themselves declare to the attending physician their intention to receive a disability group and ask for a referral to undergo MSEC.

Sometimes parents of a sick child, who want to receive a disability category, have to make efforts to convince representatives of the medical commission about the existence of impaired functioning of the child's body.

To pass the expert medical commission, it is necessary to prepare documents from this list:

• Referral of the attending physician to MSEC.
• Original and copy of birth certificate.
• Original and copy of the passport of one of the parents or guardian.
• Original and photocopy of the passport (for persons over 14 years of age).
• A certified copy of the work record of parents or guardians.
• Outpatient card of the child.
• Extracts from all hospitals where the child was treated, as well as their copies.
• Application for certification.
• Document confirming the place of registration of the child.

The extension of disability to a child in 2019 takes place in exactly the same way. Parents collect everything again Required documents and together with the child undergo a medical and social expert commission.

Removal of disability from children in 2019 upon expiration

The removal of disability from children in 2019 takes place automatically after the expiration of the period for which this category was assigned. If the parents or guardians of children who have been assigned the status of a disability, for certain reasons, have a desire to remove the child from the register earlier, a medical expert commission is required. During such a procedure, it is important to prove that the child does not have health problems and any restrictions in self-care.

Assistance to children with disabilities and disabled since childhood is regulated at the state level. Such families are entitled to various monthly payments (pensions and benefits), as well as several types of labor, monetary and social benefits.

All these types of support from the state are designed to provide a disabled child, his parents and guardians with the most necessary things, to assist his social adaptation, maintain health and create opportunities that correspond to the capabilities of other citizens.

Cash payments for children with disabilities are issued on a declarative basis through departments pension fund Russia(FIU) or multifunctional cents(MFC). Each of them will require independent registration and submission of the necessary package of documents.

Set of social services (NSO) for children with disabilities

Disabled children and those disabled since childhood who receive a monthly cash payment are automatically provided with a monthly set of social services by law in kind. It consists of three main blocks, but can be replaced by an established cash equivalent.

NSO recipient or his parents (guardians) may refuse from receiving social services in kind, in whole or in part, receiving monetary compensation instead. You can change the order of receiving a set of services only from January 1st each following year, provided that the corresponding application is submitted to the FIU before October 1 of the current year.

Size of NSU from 02/01/2019, rub.

Note: A child with a disability, as well as a disabled person from childhood of group I, who can travel only with an escort, has the right to receive a second ticket to the resort for an accompanying person, as well as to provide him with free tickets when traveling to the place of treatment and back.

Since the NSO is part of the EDV, it is not required to go to the FIU and write a separate application to obtain it. When prescribing EDV, a disabled child immediately automatically develops entitlement to NSO in kind, about which the relevant certificate is issued to the FIU.

This help contains the following information:

• category of the beneficiary (child with a disability or disabled since childhood);
• for how long is the EDV established;
• to which social services within the NSO a citizen is entitled in a particular year.

According to this certificate, presented to medical, preventive institutions or railway ticket offices throughout the country, appropriate social services can be provided.

A citizen also has the right to refuse to receive NSO in kind, receiving instead a monetary equivalent as part of the UDV. Relevant NSO waiver statement it is enough to submit no later than October 1 of the current year to the territorial body of the PFR - then it will be valid from January 1 of the next year on an ongoing basis until the recipient changes his mind.

Benefit for caring for a disabled child

If an able-bodied parent (guardian or other person) is caring for a child who requires constant supervision, and is unable to work for this reason, he can count on. For the provision of care for each child with a disability or disabled since childhood of group I, a payment is due in the amount of:

• 10000 rub.- if care is provided by a parent, adoptive parent or guardian (until June 30, 2019, it was 5,500 rubles, but now it is);
• 1200 rub.- if another person cares.

Disabled since childhood II and III groups is a benefit not allowed.

When applying for a payment, parents (guardians) will need to document that the child needs constant care. The payment is transferred along with . In addition, the allowance is able-bodied non-working citizens exercising, and is not paid to pensioners or recipients of unemployment benefits through the employment service (CZN).

Unlike other payments of the Pension Fund, the amount of this benefit not subject to annual indexation. At the same time, until 2013, the amount of the payment was the same and amounted to 1200 rubles. regardless of who provides care, and now an increased amount of 5500 rubles has been established. for parents and guardians.

To apply for benefits, you will need to contact the FIU with the following set of documents:

• identity card and employment history caregiver;
• 2 completed applications:
  • about the grant from a non-working able-bodied citizen caring for a child, indicating the date of its commencement;
  • consent to care from a parent, guardian or other legal representative of a child with a disability or disabled since childhood of the 1st group (not required if the care is provided by the indicated persons themselves);
• 2 certificates regarding the citizen who cares:
  • from the FIU at the place of residence that he is not paid a pension;
  • from the employment service of the non-receipt of unemployment benefits;
• an extract from the certificate of examination of a disabled child in the ITU bodies (sent to the FIU independently through the channels of interdepartmental interaction).

Maternal capital for social adaptation and integration into society

Capital funds can be spent on purchase of goods and payment for services aimed at social adaptation and integration into society of a disabled child (any of the children in the family, and not the obligatory one who gave the right to a certificate), in the form of compensation money already spent on it.

To invest in paying for medical services, rehabilitation and the purchase of medicines not allowed! In practice, money from maternity capital it became possible to use for disabled children only after the issuance of Decree of the Government of the Russian Federation No. 831-r dated April 30, 2016, approving the list of relevant goods and services (48 items).

Documents to be submitted to the FIU for the transfer of maternity capital funds:

• mother's statement
• passport and SNILS of the applicant;
• individual program of rehabilitation (habilitation) of the child (IPR, IPRA);
• documents confirming the purchase of goods and services for social. adaptation and integration;
• an act from social security confirming the availability and compliance of the purchased product with the needs of the child (if the product was purchased, not the service);
• applicant's bank account details.

Benefits for children with disabilities and their parents in 2019

In addition to cash payments, many benefits are provided to children with disabilities and their parents to improve their standard of living. Assistance is provided for each disabled child whose family has grounds for receiving benefits and payments, and not. That is, all these types of assistance are assigned regardless of the financial situation of the family.

Tax deduction for a disabled child in 2019 (personal income tax benefit)

For everyone from disabled children (up to 18 years old) or a full-time student, graduate student, intern with disabilities of groups 1, 2 (up to 24 years old), a personal income tax benefit is provided, which is due both parents(adoptive parents, guardians) of a disabled child.

Land and the right to additional living space

In Art. 17 of Law No. 181-FZ of November 24, 1995 lists benefits for families with disabled children regarding housing and improving living conditions. Among them:

• Opportunity to obtain a residential property in ownership or under a social tenancy agreement for citizens who are registered as in need of improved housing conditions. At the same time, the area of ​​​​the premises under a social lease agreement may exceed the standards established for one person, but not more than twice. This condition applies to people with disabilities suffering from a severe form of a chronic disease.
• Priority obtaining a land plot for individual housing construction, farming, gardening.
• Compensation 50%:
  • to pay for housing and utilities (according to standards);
  • to pay the home improvement fee.

Benefits for the disabled when entering a university or college

Provided that the child is disabled or disabled since childhood passed entrance tests to a higher or secondary specialized educational institution, he must be enrolled out of competition. But only on condition that training in a particular institution is not contraindicated according to the results of the medical examination.

Upon admission to a university under a bachelor's or specialist's program, a disabled child or a person with disabilities from childhood of groups 1, 2, 3 is provided with the following benefits:

• the opportunity to enter without entrance exams for the budget;
• admission within the quota upon successful passing of exams;
• preemptive right to enrollment (with the same number of points for an applicant without benefits and a disabled person, preference is given to the latter);
• free education at the preparatory department, if the child has no contraindications to study at this institution.

These benefits can be used just one time Therefore, the educational institution and the future specialty should be chosen very carefully.

When applying to an educational institution, you must provide such documents:

• statement;
• identification;
• confirmation of the special rights of the applicant (certificate of disability);
• the conclusion of the medical-psychological-pedagogical commission (PMPC);
• conclusion about the absence of contraindications to study in this institution.

Other measures of social support for children with disabilities

Children with special needs can count on the following additional types of social assistance:

• priority admission to kindergartens, free admission;
• opportunity to study school curriculum at home (if the inability to attend school is confirmed by a medical certificate);
• free meals at school;
• sparing regime for passing the exam;
• assistance of social services in rehabilitation (social, psychological);
• provision of technical facilities for social and medical rehabilitation, and so on.

The regions may establish their own support measures, a list of payments and benefits for children with disabilities, including those who have been disabled since childhood. Refine them full list can be in the department of social. protecting your city.

Conclusion

Unfortunately, while on the way to the maximum social adaptation of children and disabled people from childhood to create opportunities for a full life Russian society there are still many obstacles to overcome. However, the state assumes the obligation to support disabled children and their families. Support is provided both in cash ( and , ), and (providing travel, spa treatment and the provision of medicines). Families are also offered directly for parents or guardians (,) and children (admission to universities on special conditions).

It would seem that in spite of any crises, something sacred, inviolable, must remain. You can endure tax increases, you can even survive paid parking lots. But it is impossible to refuse grants and privileges to the most defenseless. Those who simply cannot survive without help. Disabled people.

However, today, in different regions, even children have begun to be massively deprived of this status, referring to the new directives of the medical and social examination, indicated in Order No. 1024 of the Ministry of Labor. Even seriously ill children - with type 1 diabetes mellitus, congenital dysfunction of the adrenal cortex, with cerebral palsy - became victims of the new criteria. The Internet is replete with a million petitions to various bodies, but so far officials remain indifferent to them.

Justifications for deprivation of disability are often beyond good and evil. So, a 10-year-old diabetic girl from Elektrostal was not recognized as disabled due to “10% deterioration of the body”. Yes, disability is now determined by the percentage of depreciation! What it should be in order to receive free travel in transport and other benefits is not entirely clear - each commission seems to decide this issue at its discretion. There are examples when doctors do not consider already beginning vision problems, neuropathy of the lower extremities, the absence of “severe complications” ... and even the absence of coma and episodes of stay in intensive care as a basis for extending disability. “The officials say: oh, this is just an endocrine disorder!

What a disorder it is when a child can die at any moment! He actually does not have a pancreas, and his whole life turns into a strict control - what he ate, what sugar. In addition, it is a very expensive disease. We spend 10,000 rubles a month on test strips alone,” said the mother of a diabetic child from the Moscow region.

Children with diabetes are now universally deprived of disability at the age of 14 or 18. It is assumed that a child who has received a passport should be able to inject himself with insulin and control sugar. And doctors pass the verdict "healthy" - despite the fact that all over the world diabetes Type I is considered incurable. “It feels like they deliberately decided to finish off our children by depriving them of social support,” the parents say.

Healthy upon reaching the age of 18, Diana Fedorova was also recognized, whose diagnoses do not fit on one page. Here are just a few of them: dysplastic S-shaped thoracolumbar scoliosis of the 4th degree, a progressive form, bronchial asthma, allergic rhinitis, reactive changes in the pancreas... She cannot live without outside help, every month her health worsens, new chronic diseases are added. Due to her status as a disabled person, she had the opportunity to study at a teacher training college and receive medical care. Now she has lost everything: both a chance for health and a chance for a normal future.

Petitions to state bodies are also written by parents of children with a serious genetic disease - congenital adrenal cortex dysfunction, which requires lifelong hormone replacement therapy. A child can die within an hour if he is not given an injection in time. It is clear that such children are not taken to kindergarten or school - who needs problems? And even a person without a medical education is clear that such children need the support of the state. It is clear to everyone, but not to officials. They have another task - to save budget funds.

As Maria Nizhegorodova writes in her petition, her son with the most severe form of such an illness was removed from his disability. They calculated on the basis of the new Order No. 1024 - it turned out that the functions of the body during the disease were violated by only 30%. And they said that according to the new criteria, at least 5 crises a year are required for obtaining disability. Moreover, crises must be confirmed resuscitation. And they added how they cut it off: there was no resuscitation, which means there was no crisis. “According to their logic, as soon as vomiting begins, I have to sit and watch the child die in order to bring him to intensive care. The officials who come up with these orders and laws do not even come close to representing the full severity of the disease. They argue like this: if a child can speak, eat and walk independently, then he is healthy! Therefore, he is deprived of medicines, rehabilitation, support!” The mother is on the verge of despair. She had to quit her job, and why should she now buy medicine for her son? ..

Today, in the League of Patients, complaints about deprivation of disability came out on top in terms of the number of appeals. The head of the league, Alexander Saversky, has already written letters to Olga Golodets, to the Ministry of Labor, to the Public Chamber about this. The Ministry of Labor wrote a long answer. It turned out that from 1995 to 2005 the number of disabled people in the country increased sharply - and hence the state's spending on them. But many were given the status "without sufficient grounds". Therefore, now the urgent task is to reduce the number of disabled people. And their costs too. Officials reported with some pride that in just one year they had halved the number of people with newly diagnosed disabilities. “The answer shows that the state is deliberately and consciously pursuing a policy of reducing the number of people with disabilities, which leads to the inaccessibility of subsidized medicines and rehabilitation facilities, the deterioration of the health of children and adults, and premature preventable deaths,” says Saversky.

Of course, with this approach, the situation may soon change - children will begin general crises, coma, resuscitation. Just everything that is now needed to obtain the status of "disabled". But it is difficult to doubt the enterprise of our officials - after all, they can accept a new order. Such that no one can ever become a disabled person according to documents.

A boy with a "clawed paw" was deprived of disability because of the computer

President of the interregional charitable public organization"Hunter Syndrome" Snezhana Mitina gave Mercy.ru an example of how the new disability criteria are applied in practice: “Our patient was disabled at the age of 18 on the grounds that he is studying at college to become an IT specialist. He has huge contractures limitation of mobility in the joints - approx. ed.). He cannot lace up his shoes, button up his shirt or jacket himself. They buy him sweatshirts, Velcro shoes, elasticated jeans, without such clothes he cannot dress and undress on his own.

ITU staff asked this person to type some text on a computer. “His hands are twisted with a contracture, in medical language it is called a “clawed paw”. But he uses the knuckles of his little fingers to type texts very quickly. Although at the same time he cannot open a carton of milk or water in a bottle. He was not asked to take a fork in his hand, or to do any other elementary things. They just determined that he was compensated and removed the disability, ”said Mitina.

According to the Order of the Ministry of Labor No. 1024, a patient is recognized as disabled if the “disorder of body functions” is estimated at 40-100%, and the “limitation of life” at the same time reaches either 2-3 degrees in one category, or 1 degree in two or more. Appendix to the order, each disabling disease has four degrees of “severity”, depending on how much it affects the “body functions”: these are “minor violations” (10-30%), “moderate violations” (40-60% - III disability group), "severe impairments" (70-80% - group II), "significant severe impairments" (90-100% - group I).

Under the "categories of life" refers to the ability to self-service, the ability to move independently, the ability to navigate, the ability to communicate, the ability to control one's behavior, the ability to learn, the ability to work. The limitation of these categories is measured in three degrees.

President of the "Union of Patients and Patient Organizations for Rare Diseases", President of the MBOOI "Hunter Syndrome" Snezhana Mitina. Photo by Nikolai Fedorov from solidarnost.org

“Every morning his pressure is very high, and he must either lie down until 12 noon, or, if he gets up, go to an ambulance. In the medical and social examination, he was told: it's okay, just go to bed early, ”she added.

"Your baby is fine"

Parents of children with diabetes most often complain about the removal of disability. After all, after 14 years, according to Order 1024, they can independently monitor their blood sugar levels and calculate the amount of insulin administered.

The first one is purely medical. The second characterizes the social possibilities of the patient.

Various guidelines. For example, "Criteria for assessing disability in ITU institutions", "Handbook on medical and social examination of persons under 18", etc.

“According to the document, it turns out that before the age of 14, a child with diabetes must learn to control the course of the disease, count bread units, assess the adequacy of the amount of insulin administered, be able to analyze glucose levels and develop tactics in each specific situation. They expect more from him than from the attending physician, ”the head of the Nizhny Novgorod Diabetes League told Novaya Gazeta Vladimir Senyalov.

Head of the Nizhny Novgorod Diabetes League Vladimir Sentyalov with his staff. Photo courtesy moidiabet.ru

This is exactly the situation I faced Svetlana Petrovna from Saint-Petersburg. Her fourteen-year-old son Andrei was first diagnosed with diabetes. “On January 22, we get to the Rauhfus hospital by ambulance. Andrei had sugar 31, this is at a rate of 5.9, ”Svetlana Petrovna told Mercy.ru. Andrei spent a month in the hospital, the doctors had great difficulty in choosing insulin doses for him. “For the first time in the entire practice of the head of the endocrinology department, as she said, the patient was transferred from one ultra-long insulin to another. The first one didn’t fit,” recalls the boy’s mother.

The medical and social examination, which took place in March, demanded an additional examination. “The endocrinologist wrote that it was a very labile course, it was difficult to choose a dose, that the child himself could not do this,” says Svetlana Petrovna. Nevertheless, the boy was denied disability: “Everything is fine with your child, we don’t give him a disability.”

The appeal did not help. The city bureau of the ITU again sought an answer from the boy, why he himself could not give himself injections and count bread units. “But how could a child with newly diagnosed diabetes learn it so quickly if his sugar levels are constantly “jumping”? And in our family, no one was sick with this, where could he get such an experience, ”says my mother. She still managed to get a re-examination at the city bureau, for this she now has to collect all the documents in a new circle.

ITU doesn't know how to spell mucopolysaccharidosis

Is the composition of experts always adequate to the disease with which a person comes to the medical and social examination?

“Mom comes to file documents, and she is immediately told that she has a child’s illness spelled with several errors, because the word “cystic fibrosis” is spelled differently. And our disease is called "mucopolysaccharidosis", cystic fibrosis is a different disease. And very interesting questions begin that have nothing to do with mucopolysaccharidosis or the child, - said Snezhana Mitina. - If the child is still “light”, and the disease has not “eaten” him very much, then they say that there are no grounds for disability, because the loss of body functions is not so great that the child is given the status of a disabled child.<…>If a child has severe disorders, then moral pressure is exerted on the mother. Specialists who have no training in rare diseases at all intimidate mothers with poor prognosis. And instead of rehabilitation, as a rule, they offer social institutions.”

President of the Diabetic Society for the Support of Disabled Children (St. Petersburg) Mikhail Vorobyov. Photo by Mikhail Kireev from spbdnevnik.ru

As the president of the Diabetic Society for the Support of Disabled Children from St. Petersburg told Mercy.ru Mikhail Vorobyov, "Most often in commissions of ITU there is not even an endocrinologist, there is a therapist, there is a surgeon, a psychologist, but there is no endocrinologist.”

Mother of a four-year-old girl with a visual impairment Anastasia Dimina wrote"VKontakte" that the commission, which they passed in February, included only pediatricians. “We looked at the papers, they said they would send the docks to the chief oculist in the main office. And in three weeks they will call us with a decision. Is it legal? How is it that they will make a decision without seeing the child? she wonders.

Looks completely healthy

Why not differentiated approach to the definition of disability and the needs of a child with a disability? Such a question asks on your Facebook page President of the No Barriers Foundation Svetlana Nosacheva.

“My child looks completely healthy, except for one problem. After an unsuccessful operation in our own hospital (the femoral neck was broken), one of her legs became shorter than the other by only 1.5 cm. This is almost not noticeable, sometimes only when she gets tired, she begins to limp ... She does not take medicine now, she does not need care, but for the rest of her life she needs special shoes and rehabilitation ... Otherwise, this will lead to disability and joint replacement in the future, ”she writes.

“My child needs only 50,000 a year. But there are very difficult children, they need more, they need constant care, expensive technical means of rehabilitation, constant classes with teachers and doctors,” continues Nosacheva.

The establishment of disability for children is considered one-sided: it implies the payment of a pension, rehabilitation, sanatorium treatment, benefits for housing and communal services, transport benefits, care for a disabled child. But not all children with disabilities need a full “social package”. At the same time, completely denying disability to a child who needs constant rehabilitation is also unfair, Svetlana believes.

A similar opinion was expressed in an interview with "Mercy.ru" Mikhail Vorobyov. In his opinion, for children, as well as for adults, different groups of disability should be provided. “We need a more competent approach,” Vorobyov emphasized.

ITU Representatives: All right

We turned to several regional ITU Main Bureaus with a request to explain, using the example of one or two specific diseases, how exactly the impairment of body functions in combination with the degree of disability is assessed in percentage terms. In addition, we asked for an answer to the question of which groups of diseases, based on the experience of ITU, the new criteria have been worked out in detail, and for which - insufficiently detailed, and this creates difficulties in the work.

According to the employees of the FKU GB ITU on Tula region, Order No. 1024 "objectifies, specifies and introduces uniform approaches to assessing the severity of impaired body functions and criteria for establishing disability, including for children, and also minimizes corruption risks." The subjective factor in the conduct of medical and social examination and the establishment of disability is now excluded, the letter states.

“The order allows you to objectively resolve the issues of establishing disability and does not cause difficulties in making decisions for specialists from institutions of medical and social expertise,” the Tula ITU believes.

IN FKU GB ITU for the Vladimir region believe that the new criteria are adapted to European standards. They "do not expand or reduce the possibilities for determining disability, but provide an opportunity to minimize the subjective approach."

Interest calculation example

As an example of the use of a quantitative assessment of impaired body functions, Vladimir specialists cited two diseases:

“Radical nephrectomy for nephroblastoma T2N0M0 from 2016. According to paragraph 14.3.1.11 of the annexes to the classifications and criteria, during the first 5 years after radical removal of nephroblastoma at stages 1 and 2, the quantitative assessment corresponds to 60% or moderate impairment of immunity, is established 3rd disability group.

Amputation stump of the right upper limb at the level of the forearm from 2016. According to paragraph 13.2.3.5, it corresponds to 50% or moderate impairment of static-dynamic functions, a 3rd disability group is established. Disturbances in the function of one limb should be distinguished from a violation of the general statodynamic function.

“Often, citizens do not have the conditions for establishing disability: there is one or another pathology, but there are no violations of the functions of the body as a whole, and, accordingly, limitation of life, for example, after operated heart defects without symptoms of heart failure of the appropriate degree,” the ITU notes.

One and a half years in the country operates new system determination of disability. For officials, its effectiveness is obvious: during this time, the number of disabled people in the country has decreased by 230,000 people. Healthier, however, they did not become, but fell out of the reporting. Ogonyok understood how "systemic games" iron the real fates of people.

Olga Bazhenova lives in Yekaterinburg. She is raising three children alone. Two - Nikita (10 years old) and Arseniy (7 years old) - are ill with severe chronic disease phenylketonuria. This means that they almost completely lack the enzyme that is responsible for the digestion of proteins. If the disease develops, it can lead to irreversible deep mental retardation - such people do not talk, do not recognize their relatives, and do not know how to serve themselves. But there is salvation - the strictest diet, special protein-free nutrition, amino acid cocktails and rehabilitation, and the prevention of concomitant diseases. It's asthma, neurological complications, urolithiasis disease. From natural products, a child can eat one small potato, one carrot and one apple per day. Without limitation, only sugar, sunflower oil and water. Everything else is special protein-free food made from starch. It's expensive. A loaf of protein-free bread costs 220 rubles. To prepare breakfast or lunch, you need to calculate the allowed amount of food using a calculator and special tables and make almost jewelry weighing. Four or five times a day, children need to be forced to drink special cocktails. They taste so disgusting that, without parental control, children simply pour them down the sink. But it is impossible without cocktails - they and the whole complex of preventive measures save children from mental degradation.

From birth, Nikita and Arseniy had a disability and was constantly extended. But in May 2015 - a disaster - they were removed from their disability. This means that Olga lost her pension for disabled children, free medicines, free rehabilitation, benefits for paying for an apartment, and the opportunity to undergo examinations at a polyclinic without queues. All that Olga has left is an allowance of 6 thousand as a single mother. The worst thing is that there is absolutely no money for protein-free food.

When there was a disability, the children were in a rehabilitation center once every six months, once a year, - says Olga. - They were given massages, they drank medicinal courses, which are also not cheap. Received spa treatment. This is necessary, just special nutrition without rehabilitation is not enough for children. Now, having lost our disabled status, we need to stand in line at the clinic on a common basis. We waited two months to have an ultrasound. Now I live on credit, earn extra money as best I can, but, of course, not a full day - otherwise it will be possible to put an end to the children. In the year that we have been deprived of food and medicine, the psychiatrist has already recorded mental retardation.

Olga is not alone. Virtually all children in the country with phenylketonuria have had their disability lifted. At the same time, children with a variety of diagnoses "recovered" sharply.

My child has been disabled since birth, - says Tatyana from Orsk, - he has a complete through cleft of the upper lip, soft and hard palate and alveolar process. We were re-examined in February 2016 and we were refused. We have not yet closed the alveolar process, violation respiratory tract and speech. We still have to work and work, and there are a lot of expenses.

My daughter has cerebral palsy, - Elena shares, - an affective-respiratory syndrome, an open oval window in the heart, severe encephalopathy. Damaged central nervous system. We were denied disability. My child walks very little, gets tired quickly. Her legs hurt, her coordination is bad, she falls. Attacks of aggression, causing pain to itself. What to do now, who to turn to for help?

My child is 6 years old, - says Eugene, - at 3 months she had a kidney removed. Immediately issued a group of "disabled child" for a year, 4 years extended disability. Now with a diagnosis of "the only left kidney, vicarious hypertrophy, neurogenic dysfunction Bladder"plus concomitant diseases" delayed speech development "," other organic disorders of personality and behavior caused by illness, trauma and dysfunction of the brain "we were denied an extension of disability, referring to good tests and the fact that we were not in the hospital.

As it turns out, even having 52 percent of body burns is not enough for disability. The girl Ulyana from the Tyumen region in June 2014 received a burn. Doctors have diagnosed: "death of the skin with the formation of a scab." In January 2015, Ulyana was issued a certificate of disability valid for a year. In November, during the re-examination, the disability was removed. A girl with a list of diagnoses, including "hypertrophic scars of the face, neck, upper and lower extremities, torso, contractures" and "emotional-neurotic disorders, phobic reactions", in need of expensive surgeries, medicines and rehabilitation, has lost social support. The girl's mother began to write to all authorities, and only on the third attempt and with the help of a human rights organization did she manage to formalize her daughter's disability.

Not only children are losing social support. The same picture is with adults, whose disability is also removed. Behind Last year, according to the Pension Fund, 230 thousand people lost it. True, it must be borne in mind that the figures include the dead disabled people.

What is happening?

sore point

Numbers

How many children with disabilities do we have and how many of those who will have to fight for this status

612 thousand people - the number of disabled children

12,785 children suffer from life-threatening and chronic progressive rare diseases leading to reduced life expectancy or disability

5000 children are diagnosed with phenylketonuria

1500 children are sick with cystic fibrosis

10 out of 100,000 children are diagnosed with insulin-dependent diabetes mellitus

Source: Ministry of Labor, Ministry of Health

Life Percentage

In early 2015, an order was issued by the Ministry of Labor and social protection N 664n "On the classifications and criteria used in the conduct of medical and social examination of citizens by federal government agencies medical and social expertise". He changed the system of establishing disability, which had been in effect for many years and caused great criticism.

The Bureau of Medical and Social Expertise (ITU) has always had a bad reputation and were considered corrupt feeders. The forums discuss the well-known rates for disability groups - 30,000 third, 50,000 second ... In order to stop the vicious practice, it was decided to specify the parameters for which disability is given as much as possible. Previously, when determining the degree of disability, they relied on "limitations of life", based on how capable a person is of work, study, and self-service. That is, disability was seen as a social phenomenon. Now we have decided to switch to medical indicators. And this is where amazing things began to happen.

Persistent bodily dysfunction is measured on a scale of 0 to 100 percent, in increments of 10 percent. To get the third group of disability, you need to have 40-60 percent, the second - 70-80 and about 90-100 - the first. The status of "disabled child" is given at 40 percent or more.

ITU staff themselves admit that they are confused about percentages. How to calculate them? For some diseases, 40 percent and, accordingly, disability give "moderate violations", and "minor violations" - this is already 30 percent and, accordingly, the deprivation of any social support. And where is the expert who knows the difference between insignificant and moderate?

Establishing these percentages is very subjective, - says Alexander Lysenko, scientific director and chairman of the board of the National Center for Disability Problems, ONF expert on disability affairs. - They wanted to make an accurate system for assessing body dysfunctions in order to fight corruption. But in the end, they got an even bigger surge of it.

We held a meeting with the Moscow bureaus of the ITU, - says Yulia Kamal, chairman of the council of the Moscow City Association of Parents of Disabled Children, - and their specialists said: we don’t know, we don’t understand, but we should already start filling out documents on new form. And, of course, they decide not in favor of the disabled person, but in favor of maintaining the budget.

The health care reform, more precisely, wholesale savings in medical institutions, also made its contribution to the "recovery" of potential disabled people. There is simply no money for many of the studies needed to establish disability.

When examining a patient, standards of care are often not observed. medical care- says Yulia Kamal. - Especially in terms of referral to expensive examination methods. As a result, there is no documentary evidence of the severity of the condition, and often no diagnosis. And ITU doctors make a decision based on the submitted documents.

Order by order is kicked out

Order 664n, among others, did not take into account such diseases as insulin-dependent diabetes mellitus, bronchial asthma, cleft lip and palate, phenylketonuria. People with them, most often children, simply ceased to exist for the social protection system. Commissioners for children's rights in the subjects of the Federation began to sound the alarm. There were numerous complaints about the difficulty of obtaining disability, even for children with Down syndrome.

The Bureau of Medical and Social Expertise was once famous for its draconian morals and boorish attitude towards sick people (according to the ONF, by the way, only 15 percent of these institutions are adapted for the disabled). And now, armed with a new order, the ITU is especially motivated: they feel responsible for saving state funds and "suppressing dependent attitudes" among citizens.

Citizens, not without reason, perceived all this leapfrog as savagery. Representatives of the public rose up to fight against the administrative excess, they even managed to get through to the authorities - the chairman of the Federation Council Valentina Matvienko took control of the plot. Thanks to incredible efforts, the ill-fated order 664n was eventually canceled. But relief, alas, did not come - in February of this year, another order appeared, 1024n.

The new order of the Ministry of Labor, let's pay tribute, restored the rights of some patients. For example, a girl with 52 percent of body burns received a disability precisely under the corrected order. For her, he really became a salvation. However, there were no adjustments in relation to other diseases - order 1024n recorded the percentage of body dysfunctions in which people were denied disability.

The new order ruled out unequal interpretation in the regions and legalized the denial of disability to terminally ill children, write the parents of children with phenylketonuria in their petition. The document, which collected more than 5,000 signatures, was sent at the end of March to the Minister of Labor and Social Protection Maxim Topilin, but remained unanswered. “Now there is no point in challenging our children’s disability denials in court. They are justified by the current order.

Experts explain the subtleties, and these explanations make you uncomfortable. So, for example, in order for children with phenylketonuria to receive a disability, they need to have a serious mental retardation. And children with a bilateral cleft palate, in other words, a cleft palate, need to be relatively emaciated and demonstrate moderate speech impairment. Here, kids who are not even a year old are under attack. They cannot demonstrate speech impairments, and no parent will bring their child to such exhaustion as to receive a disability. It turns out that children who have not yet developed serious, truly irreversible consequences, according to the new criteria, “do not reach” the status of a disabled child.

We have been deceived! Officials did not change the flawed criteria of order 664n, but adopted an even more discriminatory order 1024n, - the parents of disabled children are outraged in another petition, which they sent as an appeal to the direct line to the president. - Stop mocking us! Return the state's social support to our children!"

As before, disability is denied to children with such diagnoses as cystic fibrosis, bronchial asthma, diabetes mellitus, Down's syndrome, hearing loss of the 4th degree and deafness, after cochlear implantation (a radical operation, performed when other methods of hearing restoration do not help). In total, there are twenty-four diagnoses for which disability can be withdrawn. The criteria for these diseases are defined in such a way that they only reach 30 percent. If a child is taken care of, he receives timely assistance, then it is almost impossible to get the 40 percent required to establish a disability. Unless you deliberately bring the child to a terrible state. But what kind of mother would do that?

There is a chance of becoming disabled

Experts say they warned the Ministry of Labor and Social Protection that the new order had not been finalized.

We told them that the order should take into account the rehabilitation prognosis, - emphasizes Alexander Lysenko, - to stipulate that the disease will progress without treatment. And so it turns out that a person is evaluated against the background of ongoing treatment and they say - your percentage is lower than established, so you are not disabled and you are losing medicines. It turns out in the end: in order to get a chance to become a recognized disabled person, you need to lose your medicines. It's horrible.

There is a government-approved list of life-threatening, chronic progressive rare diseases that reduce life expectancy. And it’s completely pointless to reach a certain percentage for them, - says Natalya Kudryavtseva, a lawyer with the Moscow City Association of Parents of Disabled Children. - The sooner comprehensive support is provided - medical, rehabilitation, social - the higher will be the quality of life of this child the longer its lifespan will be.

Many experts believe that it is necessary to ensure that it is not only disability that provides benefits.

We have an underdeveloped service delivery system, explains the co-chairman of the Coordinating Council for Disabled Children and Other Persons with Disabilities in Public Chamber RF Elena Klochko.- If a person needs social support, it should be provided regardless of disability. And we have all this very strictly tied to disability.

In fact, the current system is unprofitable for the state. Now it pays pensions to disabled people and pays for medicines. But if people had the opportunity to receive the necessary medicines, then they might not even need a state pension. It is necessary to separate these concepts - disability and social protection.

For a year and a half, parents have been trying to get through to the Ministry of Labor, the Ministry of Health, the president, the commissioner for human rights. And everywhere they get replies. The Ministry of Health, that the Ministry of Labor is responsible for the removal of disability. The Ministry of Labor refers to the fact that this is the competence of the Ministry of Health. But at the same time, he promises to check who and why the disability was removed in 2015. But what will monitoring give if everything is according to the law?

Olga Bazhenova received a striking letter from the Department of Medical Assistance to Children of the Ministry of Health Sverdlovsk region. In it, the deputy director of the department, Olga Chumakova, writes that protein-free nutrition for children with phenylketonuria has not been prescribed for 20 years.

Perhaps, in percentage terms, to evaluate not only disability, but also the ability of officials to respond to the misfortunes of the population entrusted to them? And to tie their salary to this ... Whether they would have reached at least "insignificant" or "moderate" levels is a big question.