How to get legal support and support for parents of children with serious illnesses

Such families often turn to charitable foundations and patient organizations for legal advice, financial assistance to pay for rehabilitation, medicines, social services, but they can not help everyone and not always. We talk about the support received by parents of children with complex serious illnesses in the material.

According to the annual bulletin of the Expert Council on Rare (Orphan) Diseases, at the end of 2021, there were 15,310 patients with life-threatening and chronic progressive rare (orphan) diseases in the regional segments of the Federal Register. Of these, 47.4 percent are children aged 0-17. Moreover, only those rare diseases that are listed in the list of 17 nosologies and 14 high-cost nosologies are included in the statistics. According to the analytical project "To be precise", it is impossible to reliably estimate the number of people with rare diseases in Russia. Only those patients who are included in the two official assistance programs are displayed in government statistics, and this is only a small part. If we talk about oncological diseases, then, according to the N.N. Petrov, in Russia annually at 3, 5-4 thousand children are diagnosed with malignant neoplasms. More than 80 percent of tumors can be cured and brought into remission. There are no data on cerebral palsy in Russia - the Ministry of Health of Russia does not maintain a register of such patients. About 46 newborns out of 100,000 newborns are diagnosed with cerebral palsy, and about 7,000 new cases are detected annually.

The main and extremely acute problem for patients with rare diseases, according to the results of a study by the All-Russian Union of Patients and the All-Russian Society of Rare (Orphan) Diseases, remains the availability of life-saving drugs. 59.4 percent of the respondents reported the unavailability of subsidized medicines. Parents of underage patients prevailed among the respondents (79.4 percent).

Yuri Zhulev, co-chairman of the All-Russian Union of Patients, confirms that almost every second respondent pointed to interruptions and late dispensing of medicines. “Parents often don’t know how to get medicines: they have a certain drug on their prescription, they go to the pharmacy, they say go to the clinic for a prescription, but for some reason they can’t get a prescription at the clinic. There are medicines that are required a person free of charge within the framework of the CHI system. RF, which are purchased for each child individually by decision of the medical commission," he says.

Employees of the Live, Baby charity fund, which helps sick children from all over Russia with cerebral palsy and other serious illnesses, note that 90 percent of parents turn to them for help in paying for rehabilitation courses when help is needed urgently or it definitely cannot be obtained from the state . The fund also helps with the purchase of technical rehabilitation equipment, less often - pays for medicines, some examinations or tests.

“People turn to us because they don’t know that they can get the service for free. In this case, we are forced to refuse parents, but we try to explain how you can help the child through compulsory medical insurance or through other programs. But it’s very difficult for an ordinary person to understand the legislative part, there many subtleties.Aid to a child often needs to be rendered urgently.Unfortunately, state institutions are in no hurry to explain to parents what they can get under the law, how to act in this or that situation.On the experience of our foundation, we see an indifferent, and sometimes even rude attitude towards parents And families often do not understand how to get even ordinary social services like a babysitter or a social taxi through the ministry's website," says Mikhail Mokhov, deputy head of the Live, Baby Foundation.

Most families with seriously ill children are forced to continue to struggle with the bureaucratic system in order to receive all the free assistance the child needs from the state. And support, support and legal assistance are extremely important for them. It is this program that is organized by AlfaStrakhovanie - OMS within the framework of the Children's Law program.

Little Matvey is a welcome child in a loving family. Parents went through a lot, including unsuccessful IVF attempts, and when the long-awaited son was born in 2019, they were simply happy.

Matvey's mother Elena recalls that immediately after the birth of the child, everything was fine, but then she and her husband noticed that the baby had a strange muscle weakness, at 4 months he could not hold his head and was not gaining weight well. We ran to the doctors - first to the clinic, then to the children's hospital. The doctors threw up their hands. And when Matvey was 8 months old, he suddenly began to choke, and his parents urgently took him to the hospital. There, the baby spent 8 months in intensive care: he could no longer breathe on his own and was connected to a ventilator. The diagnosis could not be made for a long time, and then a genetic test showed a rare form of spinal muscular atrophy with respiratory disorders (SMARD). This is the name of a genetic progressive neuromuscular disease (characterized by the gradual death of the muscles of the body, including the heart),

“My son was in intensive care alone, we were allowed to see him only for two hours a day,” Elena tries to hold back her tears, telling how the boy suffered both bacterial and fungal infections. “I had to endlessly go to doctors and complain to various authorities, only then something was being done. And since April 2020, when the coronavirus restrictions began, we were no longer allowed to see our son at all."

As a result, the baby was recognized as palliative, that is, it is impossible to cure him, you can only alleviate his condition.

“We decided that the child should live at home in a loving family for as long as he is allowed,” continues Elena. him all the time."

“And then the fight for the rights of my child began, because according to the law, palliative children should be provided with all the necessary consumables and technical equipment free of charge, but we did not receive anything,” Elena continues. “For about a year, we wrote to all possible authorities. moved, but at the same time there was constant confusion - they gave out the wrong materials and consumables: the child has a tracheostomy, and we are given oxygen masks or adult catheters, which absolutely do not suit Matvey, and all this was delayed in time. We were heard only through complaints ... "

In the spring of 2021, Elena first received a call, and then an e-mail was sent from the AlfaStrakhovanie-OMS company, in which Matvey is insured under compulsory health insurance. That's how she learned about the Children's Law program. Elena says that by that moment her hands had completely dropped - the consumables had run out, she had to borrow them from other families with palliative children. She has already realized that her endless applications are not effective, she needs professional help.

After agreeing to support under the "Children's Right" program, the life of the family changed, Elena began to be helped by a whole team of professionals from the insurance company. "The lawyer of AlfaStrakhovanie - OMS met with me personally, analyzed our situation and proposed a plan for further action." Together with Matvey's mother, specialists from the insurance company prepared an appeal to the Prosecutor General's Office of the Russian Federation, and after a while the baby was provided with everything necessary. For the first time in a long time, his parents were relieved. While the issue was being resolved, AlfaStrakhovanie-OMS employees were in constant contact with Elena, advised and supported her.

“The company's lawyers took our case very seriously and carefully, gave professional recommendations, prepared all the necessary documents for me,” says Elena. “I was pleasantly shocked. result and maximum help to my child. Now we are not afraid! We began to enjoy life."

Alla Andreeva, head of the AlfaStrakhovanie-OMS legal department, says that the Children's Law program started in mid-2021. "This is a program of free legal assistance to parents who have children with rare severe diseases, oncology or cerebral palsy. Its uniqueness is that the issues that we deal with, although they are directly related to the treatment of a child, go far beyond the scope of compulsory medical insurance," emphasizes - And the problematic topics are not only the receipt of consumables and medicines, but also an accessible environment, and registration / extension of disability, and the right to free travel for a child accompanying to the place of treatment, and even the possibility of obtaining benefits when applying for an OSAGO policy. resolved through the Social Insurance Fund, such as the purchase of wheelchairs, standers, walkers, orthoses - everything that affects the quality of life of a child. All this is not included in the CHI system, but it is also free of charge, and there is a separate procedure for obtaining these products, starting with the issuance of a document called IPRA (individual rehabilitation or habilitation program) for the child.

At the first stage of the program implementation, insurance representatives of the company's contact center called parents whose children are insured by AlfaStrakhovanie-OMS for oncology, cerebral palsy and orphan (rare complex) diseases, such as spinal muscular atrophy , "cystic fibrosis" and others. Parents received comprehensive information about the possibilities of "Children's Law" and how to quickly get legal assistance and targeted support, if necessary.

“Someone came to us right away, because the issues for the family were very acute, sore, someone asked for our support after a while,” explains Alla Andreeva. “The scope of legal support includes a deep legal analysis of the situation and medical documentation, drawing up appeals to the Ministry of Health, the prosecutor's office, the commissioner for children's rights and other authorities, preparing pre-trial claims, statements of claim, deputies of the Legislative Assembly, and so on.

The report of the Accounts Chamber of the Russian Federation on the protection of the rights of the insured in the field of compulsory medical insurance indicates that claims filed by medical insurance organizations (HIOs) in the interests of insured citizens are satisfied more often than claims filed by the citizens themselves. The agency made a proposal at the legislative level to empower HMOs to provide citizens with legal, informational and other assistance in protecting the rights of those insured in court.

Alla Andreeva notes that a lot depends on the professionalism and involvement of employees. The company employs an excellent team of caring lawyers. “We all can tell with the utmost competence what exactly is possible and why this or that is impossible, but we are faced with a different task - to find answers not to the question “why not”, but to the question “how to make sure that yes”. program "Children's Law" is first analyzed by lawyers individually, then we arrange a brainstorming session, and also study both specialized medical literature and cases from judicial practice.When there is no time to wait for the authorities to process the appeal, our specialists themselves call polyclinics, pharmacies, find out the nuances for a particular parent, literally which window to turn to and at what time what to say. The company's lawyers explain to parents: in order to get something, you need to do something, and according to the law, you must get it within such and such a time frame. And if the result is not achieved for one reason or another, they offer to draw up an appeal to the prosecutor's office or a statement of claim to the court, and talk about the next procedural steps. If we are talking about a lawsuit, AlfaStrakhovanie - OMS participates in the case as a third party and supports the legal requirements of the applicant, she says. “And most importantly, we do not want to make a legally correct response to the appeal, which will be useless in practice, but to give the parent who applied, a feeling of support, to show that he is not alone with his trouble, to offer a solution that can lead to the desired result.” And according to the law, you should receive it within such and such a time frame. And if the result is not achieved for one reason or another, they offer to draw up an appeal to the prosecutor's office or a statement of claim to the court, and talk about the next procedural steps. If we are talking about a lawsuit, AlfaStrakhovanie - OMS participates in the case as a third party and supports the legal requirements of the applicant, she says. “And most importantly, we do not want to make a legally correct response to the appeal, which will be useless in practice, but to give the parent who applied, a feeling of support, to show that he is not alone with his trouble, to offer a solution that can lead to the desired result.” And according to the law, you should receive it within such and such a time frame. And if the result is not achieved for one reason or another, they offer to draw up an appeal to the prosecutor's office or a statement of claim to the court, and talk about the next procedural steps. If we are talking about a lawsuit, AlfaStrakhovanie - OMS participates in the case as a third party and supports the legal requirements of the applicant, she says. “And most importantly, we do not want to make a legally correct response to the appeal, which will be useless in practice, but to give the parent who applied, a feeling of support, to show that he is not alone with his trouble, to offer a solution that can lead to the desired result.” offer to draw up an appeal to the prosecutor's office or a statement of claim to the court, talk about the next procedural steps. If we are talking about a lawsuit, AlfaStrakhovanie - OMS participates in the case as a third party and supports the legal requirements of the applicant, she says. “And most importantly, we do not want to make a legally correct response to the appeal, which will be useless in practice, but to give the parent who applied, a feeling of support, to show that he is not alone with his trouble, to offer a solution that can lead to the desired result.” offer to draw up an appeal to the prosecutor's office or a statement of claim to the court, talk about the next procedural steps. If we are talking about a lawsuit, AlfaStrakhovanie - OMS participates in the case as a third party and supports the legal requirements of the applicant, she says. “And most importantly, we do not want to make a legally correct response to the appeal, which will be useless in practice, but to give the parent who applied, a feeling of support, to show that he is not alone with his trouble, to offer a solution that can lead to the desired result.”

It is important that from the insurance company under the program "Children's Law" not only lawyers work with appeals, but also insurance representatives. They help to enroll the child to a specialized specialist or for the necessary examination, control the compliance of medical organizations with the terms of assistance. The insurance company also organizes quality control of medical care, attracts the best specialists to conduct multidisciplinary examinations, the results of which give parents much-needed confidence that the child receives timely care of proper quality.

Employees of the Bereginya Charitable Foundation note that one of the most common requests from parents with seriously ill children is to receive funds for medicines to treat a concomitant disease. "Joining efforts with insurance organizations can make it possible to change the situation for the better at the administrative and legislative level, improve the quality of medical services, and speed up the process of obtaining social and legal assistance, making it more efficient," says Tatyana Golubayeva, director of the fund.

Andrey Ryzhakov, General Director of AlfaStrakhovanie-OMS, says that, according to statistics, 75 percent of applications under the Children's Law program are related to obtaining medicines, equipment, technical means of rehabilitation, 25 percent are applications related to problems with passing examinations, prolongation or registration of benefits, creation of an accessible environment for children with disabilities. “Our specialists are not just targeted to each situation,” Andrey Ryzhakov explains, “but accompany a family with a seriously ill child on legal, medical, social and other issues related to maintaining the child’s health. Such a focus on patient-centeredness is the future in the development of the system CHI,

Yuri Zhulev emphasizes that no one would like to voluntarily find themselves in a situation where third-party help is vital. "But when these situations happen, after the shock, pain and other feelings, the parents of children with complex diseases have the questions "what to do?" and "where to run?" legal support and all necessary assistance from the insurance medical organization, which has experience and resources in protecting the interests and rights of the insured, not only in the context of providing medical care under compulsory medical insurance, but also beyond it, affecting issues of social and legal significance. emotional, financial and time resources of parents". According to the expert, the program "Children's Law"