Deprivation instead of treatment. Disability economy: children are massively denied extension of disability Maternal capital for social adaptation and integration into society
A boy with a “clawed paw” was deprived of his disability because of a computer
President of the interregional charitable public organization "Hunter Syndrome" Snezhana Mitina gave Miloserdia.ru an example of how the new disability criteria are applied in practice: “Our patient had his disability removed at the age of 18 on the grounds that he was studying in college to become an IT specialist. He has colossal contractures ( limitation of mobility in joints - approx. edit.). He cannot lace his shoes or button his shirt or jacket himself. They buy him sweatshirts, Velcro shoes, jeans with elastic; without such clothes he cannot dress and undress himself.”
ITU staff asked this man to type some text on a computer. “His hands are curled with contracture, in medical parlance it’s called clawfoot.” But he uses the knuckles of his little fingers to type texts very quickly. Although he cannot open a carton of milk or bottled water on his own. He was not asked to pick up a fork or do any other basic things. They simply determined that he was compensated and removed his disability,” said Mitina.
According to Order of the Ministry of Labor No. 1024, a patient is recognized as disabled if the “disorder of body functions” is assessed at 40-100%, and the “limitation of life activity” reaches either 2-3 degrees in one category, or 1 degree in two or more.B Appendix to the order, each disabling disease has four degrees of “severity”, depending on how much it affects the “functions of the body”: these are “minor impairments” (10-30%), “moderate impairments” (40-60% - III disability group), “pronounced impairments” (70-80% - group II), “significant expressed impairments” (90-100% - group I).
“Categories of life activity” are understood as the ability for self-care, the ability to move independently, the ability to orientate, the ability to communicate, the ability to control one’s behavior, the ability to learn, the ability to labor activity. 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 Hunter Syndrome Association Snezhana Mitina. Photo by Nikolay Fedorov from solidarnost.org
“Every morning his blood pressure is very high, and he must either lie down until 12 o’clock in the afternoon, or, if he gets up, go to the ambulance. The medical and social examination told him: it’s okay, just go to bed early,” she added.
“Everything is fine with your child”
Most often, parents of children with diabetes 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.
Order of the Ministry of Labor No. 1024, which establishes a new procedure for determining disability, classifies “persistent disorders of body functions” as a percentage, and also sets out a scheme by which “the degree of severity of limitations in categories of human life activity” should be assessed. It is on the basis of these two parameters that a decision is made to establish disability.The first of them is purely medical. The second characterizes the patient's social capabilities.
To help experts, various guidelines. For example, “Criteria for assessing disability in ITU institutions”, “Handbook for medical and social examination of persons under 18 years of age”, etc.
“According to the document, it turns out that by the age of 14, a child suffering from 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 Sentyalov.
Head of the Nizhny Novgorod Diabetes League Vladimir Sentyalov with his staff. Photo from moidiabet.ru
This is exactly the situation I encountered Svetlana Petrovna from Saint-Petersburg. Her fourteen-year-old son Andrei was first diagnosed diabetes. “On January 22, we are taken by ambulance to the Rauchfus hospital. Andrei’s sugar level was 31, which is against the norm of 5.9,” Svetlana Petrovna told Miloserdiy.ru. Andrei spent a month in the hospital, the doctors had great difficulty in selecting his insulin doses. “For the first time in her entire practice as the head of the endocrinology department, as she said, a 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, required further examination. “The endocrinologist wrote that the course is very labile, it is difficult to choose the dose, and that the child cannot do this on his own,” says Svetlana Petrovna. However, the boy was denied disability: “Everything is fine with your child, we do not assign him a disability.”
The appeal did not help. The city ITU bureau again sought an answer from the boy as to why he could not give himself injections and count grain units. “But how could a child with newly diagnosed diabetes learn this so quickly if his sugar level is constantly “jumping”? And no one in our family suffered from this, where could he get such an experience,” says my mother. She still managed to get a second examination at the city bureau, for this she now has to collect all the documents in a new circle.
The ITU does not know how to spell the word “mucopolysaccharidosis”
Is the composition of experts always adequate to the disease with which a person comes for a medical and social examination?
“A mother comes to submit documents, and they immediately tell her that her child’s disease is 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,” she said Snezhana Mitina. - If the child is still “light” and the disease has not “eaten” him too 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 assigned the status of a disabled child.<…>If a child has severe disorders, then moral pressure is put on the mother. Specialists who have no training at all in rare diseases intimidate mothers with bad prognoses. And instead of rehabilitation, they usually offer social institutions.”
President of the Diabetic Society for Support of Disabled Children (St. Petersburg) Mikhail Vorobyov. Photo by Mikhail Kireev from spbdnevnik.ru
As the president of the “Diabetic Society for Supporting Disabled Children” from St. Petersburg told Miloserdiy.ru Mikhail Vorobiev, “most often the ITU commissions don’t even have 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 visual impairment Anastasia Dimina wrote“VKontakte” that the commission they passed in February included only pediatricians. “They looked at the papers and said they would send the documents to the chief ophthalmologist at the main bureau. And in three weeks they will call us with a decision. Is this legal? How is it - they will make a decision without seeing the child?” - she is surprised.
Looks completely healthy
Why is there no differentiated approach to defining disability and the needs of a disabled child? This question is asked on your Facebook page President of the Without Barriers Foundation Svetlana Nosacheva.
“My child appears to be completely healthy, except for one problem. After an unsuccessful operation in our 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 doesn’t take medications now, she doesn’t need care, but for the rest of her life she needs special shoes and rehabilitation... Otherwise, this will lead to future disability and joint replacement,” she writes.
“My child needs only 50,000 per 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.
Establishing disability for children is viewed one-sidedly: it implies payment of a pension, rehabilitation, sanatorium and resort treatment, housing and communal services benefits, transport benefits, and care for a disabled child. But not all disabled children 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 Miloserdiyu.ru Mikhail Vorobiev. In his opinion, different disability groups should be provided for children, as for adults. “We need a more competent approach,” Vorobiev emphasized.
ITU representatives: everything is fine
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 as a percentage. In addition, we asked to answer the question for which groups of diseases, based on the experience of the ITU, the new criteria have been worked out in detail, and for which - insufficiently detailed, and this creates difficulties in the work.
According to employees of the FKU GB MSE in the Tula region, order No. 1024 “objectifies, specifies and introduces uniform approaches to assessing the severity of impaired body functions and criteria for determining disability, including for children, and also minimizes corruption risks.” The subjective factor in conducting a medical and social examination and establishing disability is now excluded, the letter states.
“The order allows us to objectively resolve issues of establishing disability and does not cause difficulties in making decisions for specialists from medical and social examination institutions,” 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 quantitative assessment of dysfunction of the body, Vladimir specialists cited two diseases:
“Radical nephrectomy for nephroblastoma T2N0M0 from 2016. According to clause 14.3.1.11 of the appendices to 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 immune functions, established 3 disability group.
Amputation stump of the right upper limb at the level of the forearm from 2016. According to clause 13.2.3.5, it corresponds to 50% or moderate impairment of static-dynamic functions, disability group 3 is established. It is necessary to distinguish dysfunction of one limb from a violation of the general statodynamic function.”
“Often citizens do not have the conditions to establish disability: one or another pathology is present, but there are no dysfunctions of the body as a whole, and, accordingly, restrictions on life activity, for example, after operated heart defects without symptoms of heart failure of the corresponding degree,” the ITU notes.
Assistance to children with disabilities and people with disabilities 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 the disabled child, his parents and guardians with the most necessary things, assist his social adaptation, maintain health and create opportunities that correspond to the capabilities of other citizens.
Cash payments for disabled children are processed by application through departments Pension Fund of Russia(PFR) or multifunctional cents(MFC). Each of them will require independent registration and submission of the required package of documents.
Set of social services (NSS) for disabled children
Disabled children and people with disabilities 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 a set monetary equivalent.
The recipient of the NSO or his parents (guardians) may refuse from receiving social services in kind, fully or partially, receiving monetary compensation instead. You can change the order in which you receive a set of services only from January 1 each subsequent year, provided that the corresponding application to the Pension Fund is submitted before October 1 of the current year.
Amount of NSO from 02/01/2019, rub.
Note: A child with a disability, as well as a group I disabled person since childhood, who can only travel with an escort, has the right to receive a second trip to the resort for an accompanying person, as well as to be provided with free tickets when traveling to the place of treatment and back.
Since the NSO is part of the EDV, to obtain it you do not need to go to the Pension Fund and write a separate application. When prescribing EDV, a disabled child immediately automatically develops right to NSO in kind, about which the Pension Fund issues a corresponding certificate.
This help contains the following information:
- category of beneficiary (disabled child or disabled since childhood);
- for what period is the EDV established;
- what social services within the NSO a citizen is entitled to in a particular year.
Based on 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 NSI in kind, receiving instead the cash equivalent as part of the EDV. Relevant statement of refusal from NSO it is enough to submit no later than October 1 of the current year to the territorial body of the Pension Fund - then it will be valid from January 1 of the next year on an ongoing basis until the recipient changes his decision.
Allowance 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, each disabled child or disabled child of group I is entitled to a payment in the amount of:
- 10,000 rub.- if care is provided by a parent, adoptive parent or guardian (before June 30, 2019 it was 5,500 rubles, but now it is );
- 1200 rub.- if another person is caring for you.
For people with disabilities of groups II and III from childhood, this benefit not allowed.
When applying for payment, parents (guardians) will need to document that the child needs constant care. The payment is transferred along with . In addition, the benefit is due able-bodied non-working citizens, carrying out, and is not paid to pensioners or recipients of unemployment benefits through the employment service (PES).
Unlike other payments from the Pension Fund, the amount of this benefit not subject to annual indexation. Moreover, until 2013, the payment amount was uniform and amounted to 1,200 rubles. regardless of who provides care, and now an increased amount of 5,500 rubles has been established. for parents and guardians.
To apply for benefits, you will need to contact the Pension Fund with the following: set of documents:
- ID card and employment history caregiver;
- 2 completed applications:
- on the assignment of benefits from a non-working able-bodied citizen caring for a child, indicating the start date;
- about consent to provide care from a parent, guardian or other legal representative of a disabled child or a person disabled since childhood of group 1 (not required if the care is provided by these persons themselves);
- 2 certificates regarding the citizen caring for:
- from the Pension Fund at the place of residence that he is not being paid a pension;
- from the employment service about his non-receipt of unemployment benefits;
- an extract from the certificate of examination of a disabled child by the ITU (sent to the Pension Fund independently through interdepartmental interaction channels).
Maternity capital for social adaptation and integration into society
Funds from maternity capital 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 has given the right to a certificate), in the form of compensation money already spent on it.
Invest in payment for medical services, rehabilitation and purchase of medicines not allowed! In practice, it became possible to use money from maternity capital for disabled children only after the release of Order 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 that need to be submitted to the Pension Fund for the transfer of maternity capital funds:
- statement from the mother;
- passport and SNILS of the applicant;
- individual program of rehabilitation (habilitation) for a child (IPR, IPRA);
- documents confirming the purchase of goods and services for social services. adaptation and integration;
- a social security act confirming the availability and compliance of the purchased product with the needs of the child (if the product was purchased and not a service);
- applicant's bank account details.
Benefits for disabled children and their parents in 2019
In addition to cash payments, children with disabilities and their parents are provided with many benefits designed 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 prescribed regardless of financial situation families.
Tax deduction for a disabled child in 2019 (personal income tax benefit)
For everyone disabled children (up to 18 years old) or full-time students, graduate students, interns with disabilities of groups 1, 2 (up to 24 years old) are provided with a personal income tax benefit, which is due both parents(adoptive parents, guardians) of a disabled child.
Land plot 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 living space and improving living conditions. Among them:
- The opportunity to obtain residential premises as property or under a social tenancy agreement for citizens who are registered as needing improved housing conditions. At the same time, the area of the premises under the social lease agreement may exceed the standards established for one person, but no more than twice. This condition applies to disabled people suffering from a severe form of a chronic disease.
- Priority acquisition of land for individual housing construction, farming, gardening.
- Compensation 50%:
- to pay for housing and utilities(according to standards);
- to pay a contribution for major housing repairs.
Benefits for people with disabilities when entering a university or college
Provided that the child is disabled or has been disabled since childhood passed entrance tests to higher or secondary special education educational institution, he must be admitted out of competition. But only on the condition that studying at a particular institution is not contraindicated based on the results of the medical examination.
When entering a university under a bachelor's or specialist's degree 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 enroll without entrance exams on a budget;
- admission within the quota upon successful passing of exams;
- preferential right to admission (if an applicant without benefits and a disabled person have the same number of points, preference is given to the latter);
- free education in the preparatory department, if the child has no contraindications to study in this institution.
These benefits can be used just one time Therefore, you should choose your educational institution and future specialty very carefully.
When submitting an application to an educational institution, you must provide the following documents:
- statement;
- identification;
- confirmation of the applicant’s special rights (certificate of disability);
- conclusion of the medical-psychological-pedagogical commission (PMPC);
- conclusion about the absence of contraindications to study at this institution.
Other measures of social support for disabled children
Children with special needs can count on the following additional types of social assistance:
- priority admission to kindergartens, free attendance;
- opportunity to study school curriculum at home (if the inability to attend school is confirmed by a medical certificate);
- free school meals;
- gentle regime for passing the Unified State Exam;
- assistance from social services in rehabilitation (social, psychological);
- provision of technical means for social, everyday and medical rehabilitation, and so on.
Regions may establish their own support measures, a list of payments and benefits for disabled children, including those disabled since childhood. You can check their full list in the social services department. protecting your city.
Conclusion
Unfortunately, on the way to maximum social adaptation of children and disabled people from childhood, in order to create opportunities for them to live a full life, Russian society still needs to overcome many obstacles. However, the state assumes the responsibility to support disabled children and their families. Support is provided both in terms of money ( and , ) and (providing travel, spa treatment and provision of medications). Families are also offered directly to parents or guardians (,) and children (admission to universities under special conditions).
A new system for determining disability has been in effect in the country for a year and a half. For officials, its effectiveness is obvious: during this time, the number of disabled people in the country has decreased by 230 thousand people. True, they did not become healthier, but they dropped out of the reporting. Ogonyok looked into how “system games” iron out the real destinies of people.
Olga Bazhenova lives in Yekaterinburg. She is raising three children alone. Two - Nikita (10 years old) and Arseny (7 years old) - suffer from a 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 severe mental retardation - such people do not speak, do not recognize their relatives, and do not know how to care for themselves. But there is salvation - a strict diet, special protein-free nutrition, amino acid cocktails and rehabilitation, prevention of concomitant diseases. These are asthma, neurological complications, urolithiasis. From natural products, a child can eat one small potato, one carrot and one apple per day. Without restrictions 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 perform almost jewelry weighing. Children should be forced to drink special cocktails four to five times a day. They taste so disgusting that without maternal supervision, children simply pour them down the sink. But you can’t live without cocktails - they and the whole range of preventive measures save children from mental degradation.
From birth, Nikita and Arseny had a disability and it was constantly extended. But in May 2015 - a disaster - their disability was lifted. 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 the clinic without waiting in line. All that Olga has left is an allowance of 6 thousand as a single mother. The worst thing is that there is absolutely not enough money for protein-free nutrition.
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 took courses of medications, which are also not cheap. Received sanatorium-resort 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 general basis. We waited two months to get an ultrasound. Now I live on credit, I earn extra money as best I can, but, of course, not full time - otherwise I could give up on my children. In the year that we have been deprived of food and medicine, the psychiatrist has already documented mental retardation.
Olga is not alone. Almost all children in the country with phenylketonuria have had their disability removed. 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 underwent a second re-examination in February 2016 and were denied. Our alveolar process is not yet closed, the respiratory tract and speech are impaired. We still have to work and work, and there are a lot of costs.
“My daughter has cerebral palsy,” shares Elena, “affective-respiratory syndrome, a patent foramen ovale in the heart, and severe encephalopathy. The central one is damaged nervous system. We were denied disability. My child walks very little and gets tired quickly. Her legs hurt, she has poor coordination and falls. Attacks of aggression, causing pain to herself. What to do now, who to turn to for help?
“My child is 6 years old,” says Evgeniy, “at 3 months she had a kidney removed. They immediately registered the “disabled child” group for a year, and the disability was extended for 4 years. Now, with a diagnosis of “single left kidney, vicarious hypertrophy, neurogenic dysfunction of the bladder” plus concomitant diseases “delayed speech development”, “other organic personality and behavior disorders caused by illness, injury and brain dysfunction”, we were denied extension of disability, citing 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 to cause disability. A girl Ulyana from the Tyumen region received a burn in June 2014. Doctors 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 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 operations, medications and rehabilitation, was deprived of social support. The girl’s mother began writing to all authorities, and only on the third attempt and with the help of a human rights organization did she manage to register her daughter’s disability.
It's not just children who are losing social support. The same picture applies to adults whose disability is also removed. Behind Last year, according to the Pension Fund, 230 thousand people lost it. However, it must be taken into account that the figures also include deceased disabled people.
What is happening?
Sore point
Numbers
How many disabled children do we have and how many 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 shortened life expectancy or disability
5,000 children are diagnosed with phenylketonuria
1500 children have cystic fibrosis
10 children out of 100 thousand are diagnosed with insulin-dependent diabetes mellitus
Source: Ministry of Labor, Ministry of Health
Life percentage
At the beginning of 2015, the Ministry of Labor and Social Protection issued order N 664n “On classifications and criteria used when conducting medical and social examination of citizens by federal government agencies medical and social examination." He changed the system of determining disability, which had been in effect for many years and caused great criticism.
Bureaus of medical and social examination (MSE) have always had a bad reputation and were considered corruption feeders. On the forums, well-known prices for disability groups are discussed - 30 thousand for the third, 50 thousand for the second... In order to stop this vicious practice, it was decided to specify as much as possible the parameters by which disability is granted. Previously, when determining the degree of disability, they relied on “limitations in life activity”; it was based on how capable a person is of work, study, and self-care. That is, disability was viewed as a social phenomenon. Now we decided to switch to medical indicators. And here amazing things began to happen.
Persistent impairment of bodily functions is measured on a scale from 0 to 100 percent, in 10 percent increments. To get the third disability group, 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 result in “moderate impairments,” and “minor impairments” are already 30 percent and, accordingly, deprivation of all social support. And where is the expert who knows the difference between minor 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, an ONF expert on disabled people. “We wanted to create an accurate system for assessing dysfunctions of the body in order to fight corruption. But in the end we got an even bigger splash.
We held a meeting with the Moscow ITU bureaus,” says Yulia Kamal, chairman of the board 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 for new form. And, of course, they decide not in favor of the disabled person, but in favor of preserving the budget.
Health care reform, or more precisely, widespread savings in medical institutions, also made its contribution to the “recovery” of potential disabled people. There is simply no money for many studies necessary to establish disability.
When examining a patient, standards of medical care are often not met,” 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 the ITU doctors make a decision on the submitted documents.
An order is knocked out by an order
Order 664n, among others, did not take into account such diseases as insulin-dependent diabetes mellitus, bronchial asthma, cleft lip and palate, and phenylketonuria. The people with them, most often children, simply ceased to exist for the social protection system. Commissioners for children's rights in the constituent entities 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 previously 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 government funds and “suppressing dependent sentiments” among citizens.
Citizens, not without reason, perceived all this leapfrog as savagery. Representatives of the public rose up to fight the administrative excesses; they even managed to reach out 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, alas, relief never came - in February of this year another order appeared, 1024n.
The new order of the Ministry of Labor, let us give it its due, restored the rights of some patients. For example, a girl with 52 percent of body burns received disability precisely according to the amended order. For her, he truly became a salvation. However, there were no adjustments for other diseases—Order 1024n recorded the percentage of disorders of body functions for which people were denied disability.
The new order eliminated the unequal interpretation in the regions and legalized the denial of disability to terminally ill children, parents of children with phenylketonuria write in their petition. The document, which collected more than 5 thousand 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 appealing the denial of disability to our children in court. They are justified by the current order.
Experts explain the subtleties, and these explanations make you feel uneasy. For example, in order for children with phenylketonuria to qualify for disability, they must have severe mental retardation. And children with a bilateral cleft of the soft palate, in other words, a cleft palate, need to be relatively malnourished and demonstrate moderate speech impairment. Here, children who are not even a year old are at risk. They cannot demonstrate a speech impairment, and no parent would push their child to the point of becoming so debilitated that they become disabled. It turns out that children who have not yet developed severe, truly irreversible consequences, according to the new criteria, “do not reach” the status of a disabled child.
We were deceived! Officials did not change the flawed criteria of order 664n, but adopted an even more discriminatory order 1024n,” parents of disabled children are outraged in another petition, which they sent as a direct line to the president. “Stop mocking us!” Give our children back social support from the state!"
Children with diagnoses such as cystic fibrosis, bronchial asthma, diabetes mellitus, Down syndrome, hearing loss of the 4th degree and deafness after cochlear implantation (radical surgery, performed when other methods of hearing restoration do not help) are still denied disability. In total, there are twenty-four diagnoses for which disability can be revoked. The criteria for these diseases are defined in such a way that they only reach 30 percent. If the child is cared for and receives timely assistance, then it is almost impossible to obtain the 40 percent required to establish disability. Unless you purposefully bring the child to a terrible state. But what kind of mother would do this?
There is a chance of becoming disabled
Experts say they warned the Ministry of Labor and Social Protection that the new order was not finalized.
We told them that the order must take into account the rehabilitation prognosis,” emphasizes Alexander Lysenko, “and stipulate that without treatment the disease will progress. And so it turns out that the person is assessed against the background of the treatment being carried out and they say - your percentage is lower than established, therefore you are not disabled and you are deprived of medications. The bottom line is that in order to get a chance to become recognized as disabled, you have to lose your medications. It's horrible.
There is a government-approved list of life-threatening, chronic progressive rare diseases that lead to a reduction in life expectancy. And it is completely pointless to hold a child up to certain percentages,” says Natalya Kudryavtseva, a lawyer at the Moscow City Association of Parents of Disabled Children. “The sooner comprehensive support is provided—medical, rehabilitation, social—the higher the quality of life of this child will be.” , 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 system for providing services,” explains Elena Klochko, co-chairman of the Coordination Council for Disabled Children and Other Persons with Disabilities at the Public Chamber of the Russian Federation. “If a person needs social support, it should be provided regardless of disability. And in our country all this is very strictly tied to disability.
In fact, the current system is also disadvantageous for the state. Now it pays pensions to disabled people and pays for medicines. But if people had the opportunity to get the medications they need, 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 reach out to the Ministry of Labor, the Ministry of Health, the President, and the Commissioner for Human Rights. And they get unsubscribes everywhere. 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 conduct an audit of who and why his disability was removed in 2015. But what will monitoring give if everything is according to the law?
Olga Bazhenova received an amazing letter from the Department of Medical Care for Children of the Ministry of Health of the Sverdlovsk Region. In it, Deputy Director of the Department Olga Chumakova writes that protein-free nutrition for children with phenylketonuria has not been prescribed for 20 years.
Maybe we should evaluate not only disability as a percentage, but also the ability of officials to respond to the troubles of the population entrusted to them? And to tie their salary to this... Whether they would reach at least a “minor” or “moderate” level is a big question.
Relatives of disabled children told Izvestia that since October 2010 there has been a “massive process” of removing disability from terminally ill children and adolescents.
“I came into contact with this case when they began to register disability for my grandson,” Muscovite Tatyana Abramova told Izvestia on June 13. - We reached the federal commission. We were called there at 10 a.m., but we stayed there until 4 p.m. There were about eight people, and I started talking with them. These are mainly children who had a disability, but it was removed. One of them is a boy from Yaroslavl. He has a genetic disease that prevents him from digesting protein. He needs special food. You can, of course, feed as usual, but this leads to dementia. And you also need to drink a smelly boiled liquid twice a day. A bottle of the domestic drug costs 1.5 thousand rubles, and it lasts for two days. There is a less disgusting one - imported. It costs 4 thousand. The boy had a disability, but it was removed in October 2010.”
Along with his disability, the baby from Yaroslavl also lost an allowance of 7 thousand rubles, which his family considered their salvation. After all, just for one “disgusting drug” he needs 15 thousand rubles a month. And this does not take into account special nutrition, the basis of which is expensive fruit.
Healthy armless children
The commission also declared a nine-year-old girl from near Saratov, who had no fingers, healthy. “Why was she invited to Moscow? To make sure that the fingers have grown?" Tatyana Abramova is indignant.
Tatyana Feodorovna's grandson was not recognized as disabled, despite an inoperable brain cyst. The boy does not attend regular school and suffers from severe headaches.
“When we were refused, I asked the relevant specialist of this commission:
“Is it okay that the child has an inoperable cyst?” They answered me: “Well, the cyst is an accidental discovery, it does not affect anything, and the boy just has a migraine.” Our child has been seeing neurologists for 13 years, and the word “migraine” has never been used anywhere. That's the story."
“There is no money, so disabilities are removed”
Mass removal of disability has become a trend, the Public Council for the Protection of Patients' Rights confirmed. “We are often approached about this issue,” said Alexey Starchenko, the organization’s executive secretary. The purpose of mass deprivation of disability is “not to produce disabled children” in order to avoid unnecessary expenses, he believes.
“The Ministry of Health and Social Development deals with the number of disabled people, allocates funds for them and establishes disability. If everything is concentrated in the hands of one organization, there is a temptation to fit one thing into another. Let's say the budget is determined - one hundred rubles. Under one hundred rubles they adjust the number of disabled people. Well, no more money. That’s why disabilities are removed,” said Alexey Starchenko.
In the current conditions, disabled people, having lost their benefits, may lose the remainder of their health.
“If earlier there was a form of disability, now functional approach, the expert explained. - They look at how all the organs work - the kidneys, the liver. Today, having a diagnosis is not yet a disability. If, with a diagnosis, your organs work well, then you are not disabled, go to work. And the worst thing is that in this case you do not receive the medicine. If there is a medicine, then the person does not worsen the disability. And if not, then over time it turns into a ruin.”
The situation has improved
The Moscow city organization of the All-Russian Society of Disabled People told Izvestia that the problem was relevant several years ago, and in the last two years the situation has “corrected.” There have been fewer complaints from parents about them.
“In fact, the number of such requests has decreased compared to what it was 2-3 years ago,” said Valery Shkolnikov, deputy chairman of the Moscow city organization of the All-Russian Society of Disabled People.
The Ministry of Health and Social Development was unable to obtain immediate comment.
The innovation of the Russian Ministry of Labor, which approved new classifications and criteria, should first of all reassure patients of the ITU bureau - people with disabilities. Some of them often expressed dissatisfaction and complained about the incorrectness of the disability groups assigned to them, explaining this by the subjectivity of specialists.
After all, disability in general and its group, in particular, are important for our people, since they provide certain social guarantees of state support: which a person with disabilities receives instead of in-kind benefits that were canceled ten years ago, as well as the opportunity to use travel, travel, and so on .
The degree of disability is determined as a percentage
Until recently, when conducting medical and social examinations, specialists were guided by scattered recommendations and instructions. Which to some extent contributed to the “discrepancy” regarding the assignment or refusal to establish disability, the “underestimation” of the group, and so on. To exclude this, at the end of last year the Russian Ministry of Labor developed clear, uniform quantitative indicators for all regions to assess the severity of dysfunctions of the human body (respiration, blood circulation, digestion, and so on). This made it possible to eliminate the subjectivity of experts during the examination.
It should be noted that there is no significant difference in approaches to establishing disability then and today. As in the previous document, the new one is based on the severity of dysfunction due to disease, injury or defect. But only now - in percentage terms.
There are 4 degrees of persistent dysfunction of the body:
I degree - given for minor impairment of body functions in the range from 10 to 30%;
II degree - with persistent moderate impairment of body functions in the range from 40 to 60%;
III degree - with severe impairment of body functions in the range from 70 to 80%;
IV degree - with persistent, significantly pronounced impairment of body functions in the range from 90 to 100%.
In order, again, to avoid the subjectivity of specialists when determining the quantitative assessment as a percentage, a corresponding document was published (annex to the classification). It sets out the clinical and functional characteristics of persistent dysfunctions of the human body in percentage terms.
A few more basic points
Even if the application does not include a specific disease, experts will consider a general approach to the class of diseases.
If there are several persistent disorders of body functions, each of them will be assessed separately. And then they will select the maximum violation expressed as a percentage.
If it is established that other disorders influence the severity of the maximum impairment of body function expressed as a percentage, then it can be increased, but not more than by 10%.
The third disability group is assigned in a new way
The ITU Bureau also drew attention to the fact that to establish disability groups, the classifications of the main categories of life activity and criteria remained the same, except for group III. If previously it was possible to obtain disability group III, having only one disability of the first degree, now two or more are required.