Why do mothers of children with cerebral palsy drink valerian before visiting a medical examination, and registration of disability can take years?
In a wheelchair for information
Government program " Accessible environment", which aims to make by 2016 unhindered access for people with disabilities "to priority facilities and services in priority areas of life", should also improve the mechanism of the state system medical and social examination. What is the problem with this examination? Its passage often costs parents bitter tears, and turns into hard work and humiliation for families.
Fortunately for Muscovites, they have the same hospital No. 18, which was mentioned in connection with the visit of D.A. Medvedev. All the specialists necessary for the examination work there, there is a special room for conducting ITU, and a mother with a sick child manages to undergo the examination relatively painlessly. Why hasn't this become the norm? Why can’t we organize the same work of ITU at a district clinic or hospital?
Unfortunately, the norm today is a procedure that is extremely painful for the mother and the child with cerebral palsy. First you need to see a pediatrician, neurologist, psychiatrist, surgeon, orthopedist, ophthalmologist, ENT specialist, having previously made an appointment with each. The clinic does not always have all the specialists, which means you won’t be able to get around them in one day or in one place. If the child is not walking, then the mother comes to the clinic in her arms with him and asks other patients sitting in front of the office to let her through out of turn. Yes, she has the legal right to go first, but this does not save her from hostility and sometimes rudeness, but the mother of a seriously ill child already has enough negative emotions in her life.
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After each specialist examines the patient and writes his report, you need to come to an appointment with the head of the children's clinic to draw up a final report, then stand in a huge queue of disabled people in the area at the adult clinic and go through the procedure of reconciling the collected documents. It is advisable to come here without a child, which means finding someone in advance to spend the day with him, which is also a problem if the family does not have a non-working but strong grandmother living nearby.
But that's not all. The package of signed papers must be submitted to the document collection point for medical and social examination, which is not located in the clinic, which means this is another trip, which is always problematic for the mother of a child with cerebral palsy. Natalya Koroleva, mother of a nine-year-old girl with cerebral palsy and project coordinator charitable foundation“Our children” told me that in the city of Zheleznodorozhny, where her family lives, there is no expert examination at all. For each re-examination, she and her daughter have to go to the city of Elektrostal and spend the day in queues, first for the examination, then for registration individual program rehabilitation (IPR).
"We're still lucky- says Natalya, - My Masha’s disability was established until October 2021, until she is 18 years old. But there are commissions where parents with a seriously ill child are simply bullied, forced to undergo medical examination every two years.” .In addition, when a disabled child, as prescribed by a specialist, requires a new technical means of rehabilitation that is not included in the current IPR, then the entire procedure of medical and social examination must be completed again and a new IPR must be drawn up! “Why can’t a new means of rehabilitation be included in the IPR and a conclusion be attached? doctors that the child needs it? Why put us through this whole nightmare again?” - parents complain bitterly.
Registration of disability is vital important question for the family of a child with cerebral palsy, because it is a pension and benefits. With benefits, however, not everything is so simple. If previously, according to the law, the family had the right to purchase the necessary technical auxiliary and rehabilitation means (corsets, splints, orthoses, strollers, crutches), and then receive from the state monetary compensation, then since February 2011 this law has not been in effect, and the parents of a sick child must either take what the state purchased on a tender basis - that is, the cheapest and poorest quality - or pay for expensive and high-quality ones out of their own pockets, being satisfied with only partial compensation. A pair of quality orthopedic shoes produced by Perseus LLC costs about 30,000 rubles, and compensation in the Moscow region is only 9,300. An accessible environment outside the home will not become accessible even with ramps, specially equipped toilets and lifts in the metro, if the family does not have money for good couple orthopedic shoes.
Registered disability is an opportunity free treatment in federal and regional sanatoriums and rehabilitation centers. And here a family with a sick child faces another contradiction between the declarations of doctors and officials and the harsh reality. It is recognized all over the world and in our country: the best time for rehabilitation is from birth to three years, but alas, a number of rehabilitation centers refuse to accept children without disabled status, and it is often possible to register disability no earlier than three years, since doctors do not rush with the diagnosis. But if you do rehabilitation centers accessible to children at risk, the number of those who will have to register for disability at the age of three will decrease. Not only the child and his family will benefit, but also the state, which will not have to spend additional funds to maintain an unhealthy member of society throughout his life.
Of all the “socially significant objects” discussed in the “Accessible Environment” program, the most significant for a child, of course, is a children’s educational institution. But for children with moderate and severe childhood cerebral palsy There are no special kindergartens or groups in ordinary kindergartens. When it’s time to go to school, parents again find themselves in a situation where the child’s rights, declared by the Constitution and Law, Russian Federation“On education”, we have to fight.
The PMPK - Psychological-Medical-Pedagogical Commission - is becoming a real nightmare for children and parents. According to the law, the decision of the PMPC is advisory in nature and applies only to the type of program: for example, children with lesions of the musculoskeletal system study according to the 6th type program, there is a 7th type program - correctional, 8th type - auxiliary, for children with diagnosed intellectual disability.
Parents have the right to choose the form of education (school, home, family) and educational institution for their child, but very often they are denied this, citing the decision of the PMPC: if the decision says “type 8 program,” then the child will not be accepted into a type 6 school. A few days before visiting the commission, mothers, and even fathers, drink valerian, because for them it is worse than the most difficult exam: in 20-40 minutes of communication with their son or daughter, specialists will draw conclusions about the child’s abilities and his readiness to learn and master the program. They will not make allowance for the child’s excitement caused by an unfamiliar environment, the presence of many new people, or overexcitement caused by a long wait in the corridor, but their verdict will determine the lifestyle of the child and family for the next year, or even several years, it depends on how much education will be available that actually corresponds to the child’s capabilities, will he be able to communicate with peers, and participate in the life of the children’s group.
Often children with cerebral palsy, with intact intellectual abilities, end up in type 8 schools, in home education (with one visiting teacher), or in distance learning without the opportunity to socialize. The sad thing is that when passing the PMPC again, specialists tend to leave the decision of the previous commission in force. At the same time, there are no permanent commissions, specialists change, and no one monitors the dynamics of a child’s development over several years. What is it like for a little man to appear before new uncles and aunts every time to show what he can do? Here even an adult will lose his nerve.
There is another painful problem. Cerebral palsy often presents with what is known in PMPK parlance as a “complex disability.” And with this “complex character” it is completely difficult to organize a child’s education at least at home, because for someone who does not speak, does not move independently, but has intact intelligence, or walks, speaks, but at the same time almost does not see, curricula not developed.
Light at the end of the tunnel
Says Alla Sablina, president of the Our Children charity foundation for children with cerebral palsy: “A barrier-free environment in schools is wonderful, but it’s not just ramps and other technical devices. Physical barriers are easy to deal with, fortunately federal budget allocated funds for this. It’s much more difficult to break down barriers in people’s heads; financial investments are not enough.”
Alla is absolutely right, at least read the reviews on the article by Anstasia Otroshchenko, from which it is clear that many readers still do not understand what inclusion is, and are seriously concerned that their healthy children are at risk of a decrease in the quality of knowledge due to the proximity of children with special needs needs. But the article very sensibly and intelligibly explains what the advantage of this approach to teaching is for absolutely all children, without dividing into sick and healthy. It’s also sad to read the review of the mother of a special needs child, who writes about the fact that her son was beaten by his classmates. These are the barriers in the minds of both adults and children, which will take years and years of hard work to overcome.
And yet there are breakthroughs. This is the second year that the inclusion class has been running in high school No. 8 of the city of Zheleznodorozhny, Moscow region. This is a joint educational project the Our Children Foundation, the Federal Institute for Educational Development and the Ministry of Education of the Moscow Region. The costs of equipment (special seats, special keyboards for computers, etc.), methodological support, and retraining of specialists were paid by philanthropists through the Our Children Foundation. The status of the experiment made it possible to reduce the class size: there are only 20 students in the class, two of them are children with severe forms of cerebral palsy who cannot move independently. It would seem like a drop in the ocean, but how important this experience is for all of us. Through the efforts of parents, enthusiasts and philanthropists, an educational model is being created, which sooner or later the state will be forced to copy: the entire civilized world is switching to it, having realized the destructiveness of dividing children into “norm” and “non-norm”.
“We worked a lot with the parents of ordinary children, taught kindness lessons to the students,” says Alla, “and today everyone notes how warm the relationship is between the children in the class, how the children try to help their friends with limited mobility. Classmates miss children with cerebral palsy when one of them gets sick and does not attend school for several days. It seems surprising, but the parents of healthy children from this class are now confident: inclusion changes life for the better for everyone, not just for sick children.”
In the second experimental class 9-year-old Masha Koroleva, who has cerebral palsy with a complex structure of the defect, also studies at school No. 8. The girl enjoys going to school, although it is not easy for her. Masha finds it difficult to write, and now she is mastering the keyboard, mathematics is not easy, but the quality of her new life is incomparable to what it was before. A whole world opened up outside the apartment and the hospital, friends appeared, a favorite teacher, a diary with assignments, school lessons and fun holidays.
I really want the barriers to collapse not only for Masha, but also for other children with cerebral palsy and their parents, for society as a whole, for the healthy and the sick, the strong and the weak, so that in any life situation For each of us, the environment remained accessible and the climate sunny.
Probably few people have not heard of this increasingly common congenital disease, like cerebral palsy or cerebral palsy. Usually, such a diagnosis is made during pregnancy, not yet to the born baby, but this does not mean at all for him and his parents that they have signed a sentence. It is known that people suffering from cerebral palsy often become successful programmers, lawyers, psychologists, and so on; cerebral palsy is only a physical deviation from the norm that can be dealt with. Of course, it can be very difficult to overcome cerebral palsy on your own, which is why the most important place in the process of caring for and treating such a baby is occupied by state assistance.
The diagnosis of cerebral palsy belongs to the list of diseases that require registration of disability. Many parents are afraid of this status and do not want to legitimize it, which becomes a rather serious mistake on their part. It is known that constant and competent care, complex therapy, massages, medications, special exercise equipment - all this can help the child achieve greater mobility of the limbs, and than earlier child begins to receive such help, the greater the chance that he will walk like almost any other person.
Required medications and complexes of diverse therapies are quite expensive, and registration of disability eliminates some of the problems. A disabled child with cerebral palsy has the right to receive from the state not only a special pension, but he is also entitled to certain list other guarantees.
Benefits and pensions for a child with cerebral palsy
The average amount of benefits that a family raising a disabled child receives every month is about 20 thousand rubles. This amount includes not only the direct pension due to a disabled person (about nine thousand rubles), but also some social payments, such as monthly payment, which can be replaced by a free sanatorium or medicine, payment for travel, and so on, as well as social payments to parents who do not work in order to provide care for a sick child with cerebral palsy and other types of social payments.
For a family with a special child, such a monthly amount cannot be excessive, because the child needs medicine, special shoes, clothing, and special exercise equipment for home exercises. Therefore, parents should not refuse to register their child’s disability in his own interests, especially since, in addition to cash payments, the state offers families of children with cerebral palsy other types of assistance.
Guarantees for disabled children with cerebral palsy
Of course, like any other child with disabilities, such special children have the right to free education, obtaining higher education on preferential terms, free books, travel, and so on. But up to a certain point, the most important thing remains precisely health care, which the state will provide to such a baby.
First of all, a child with cerebral palsy has the right to participate in a rehabilitation program. It includes not only free medicines, but also much more. For example, a child with cerebral palsy has the right to undergo treatment annually in a sanatorium, undergo free courses physiotherapy, massage, and also take a course every few months physical therapy on specially designed simulators.
Also, as part of the program to help children with cerebral palsy, the families of such children can receive free from the state special shoes, means of transportation if the child cannot walk independently, home exercise equipment and other necessary for the child orthopedic means.
All these types state aid Subject to the recommendations of doctors and the boundless love of parents for their child, they can help the baby quickly adapt to life, learn to walk and live a full, albeit not so active, life.
Hello. My daughter is 4 years old. Diagnosis: cerebral palsy, atoxic-astatic form, cerebral palsy. We are constantly undergoing treatment, but there is no result. There is no speech, coordination is impaired. Are we entitled to a disability group?
Expert's answer
Hello, Elena. One thing you need to know is that disability is not determined by a diagnosis, but by the limitation of a person’s life activities. When establishing a disability group for cerebral palsy, the following criteria are taken into account:
- motor activity - can the child move independently or does he need help from others or special devices for this?
- intellectual activity - first of all, this issue takes into account the ability to learn, as well as the severity of the intellectual defect (if any)
- disorders of speech, vision, hearing that seriously affect the child’s ability to communicate with other people
- presence (or absence) of seizures.
Ideally, the presence of the above criteria determines the disability group. Now medical commissions can make different decisions.
However, if your child really has signs of disability (and judging by your question this is the case) and then you can count on a positive decision by the ITU bureau commission to assign your child a disability group. You can find out all the details from your pediatrician about what documents are needed to submit to this medical commission.
What assistance do disabled children and childhood disabled people receive from the state?
Do you need information on this issue? and our lawyers will contact you shortly.
Housing benefits
Benefits for traveling on public transport
Children with disabilities, as well as those accompanying them, receive the right to free use of public transport running on city and suburban routes.
The state provides free travel to places of treatment and rehabilitation for disabled children. The possibility of free travel exists for both parents and social workers, but only when their accompaniment is required by a disabled person of group 1.
In addition, disabled children of groups 1 and 2 and disabled children receive a discount of up to 50% on travel by air, river or railway transport between October and May. The discount is provided once a year in any selected period.
To receive benefits, you must present your pension certificate when purchasing a ticket. For relatives, social care authorities issue a special certificate.
This benefit does not apply to taxis.
Sphere of training and rehabilitation
Tax benefits
For parents or guardians of a disabled child Tax Code a number of benefits are provided:
- Monthly personal income tax deduction from wages parents (in the amount of 3,000 rubles for each parent, or in the amount of 6,000 rubles for a parent raising a child alone).
- Other deductions, for example, to pay for treatment.
- Exemption of a child from property tax.
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Cerebral palsy (CP) is chronic disease brain, which is not progressive. It consists of a number of symptom complexes: disturbances in the motor sphere and secondary deviations that arise due to underdevelopment or damage to brain structures during pregnancy or childbirth.
Although modern medicine is characterized by many achievements and preventive measures, people suffer from cerebral palsy big number: 1.7-5.9 per thousand newborn babies. Boys get sick more often than girls in a ratio of 1.3:1.
What causes cerebral palsy?
Why are children born with cerebral palsy? In all cases of this disease, we are talking about the pathology of neurons, when they have structural abnormalities that are incompatible with normal functioning.
Cerebral palsy can be caused by unfavorable factors in the most different periods brain formation. From the first day of pregnancy throughout 38-40 weeks and the first weeks of life, when the child’s brain is very vulnerable. Statistics show that in eighty percent of cases the reason is negative impact in the prenatal period and during childbirth, the remaining 20% occur in the postpartum period.
The most common causes of cerebral palsy
1. The development of brain structures is disrupted (because they are passed on from generation to generation genetic disorders or it's a matter of spontaneous mutation genes).
2. Infectious diseases (intrauterine infections, especially encephalitis, meningitis, the TORCH group, arachnoiditis, meningoencephalitis) can be transmitted in utero and in the first months of life.
3. The cause may also be a lack of oxygen (cerebral hypoxia): acute (birth asphyxia, rapid labor, premature placental abruption, umbilical cord entanglement) or chronic (insufficient blood flow in the placental vessels due to fetoplacental insufficiency).
4. Toxic effects on a child (due to smoking, alcohol, drugs, occupational hazards, strong medicines, radiation).
5. Chronic diseases of the mother (presence of bronchial asthma, heart defects, diabetes).
6. Incompatibility between fetus and mother various reasons(the presence of a blood group conflict with the development hemolytic disease, Rhesus conflict).
7. Mechanical injuries (for example, intracranial injury during childbirth).
Eat high risk in children who were born prematurely. In addition, there is a high risk in children whose birth weight was less than 2,000 g, in children with multiple pregnancies (twins, triplets).
None of the above reasons are 100% correct. If a pregnant woman has diabetes or has had the flu, this will not necessarily cause the child to develop cerebral palsy. The risk of having a baby with cerebral palsy in this case increases compared to healthy women, but not more. Naturally, several factors increase the risk of pathology. In cases of cerebral palsy, there is rarely only one significant cause. There are often several factors involved in the history.
Therefore, such prevention is needed this state: pregnancy should be planned with the sanitation of chronic foci of infection. There should be timely examinations during pregnancy. And if necessary, appropriate treatment should be provided. They also think through individual delivery tactics. The factors mentioned are considered the most effective measures prevention of cerebral palsy.
Symptoms in children
Symptoms of cerebral palsy often relate to movement disorders. The type of these disorders and their severity differ depending on the age of the baby. In this regard, the following stages of the disease are distinguished:
1) early - up to five months of life;
2) initial residual – from six months to three years;
3) late residual – after three years.
At an early stage, the diagnosis is rarely made, because these motor skills are few at this age. But there are still specific signs that may be the first symptoms:
· children have unconditioned reflexes, fading away at a specific age. If these reflexes are present even after a certain age, this is a sign of pathology. For example, if we talk about the grasping reflex (pressing a child’s palm with a finger causes a reaction of grasping this finger and squeezing the palm), then in healthy children it disappears after four to five months. If the reflex still remains, then this is a reason to examine the child more carefully;
· delay in motor development: there are average periods for the appearance of specific skills (when the child holds his head, rolls over from his stomach to his back, purposefully reaches for a toy, sits, crawls, walks). The absence of these skills within a certain period of time should alert the doctor;
· muscle tone is impaired: decreased or increased tone can be determined by a neurologist during an examination. As a result of changes in muscle tone, there may be aimless, excessive, sudden or slow worm-like movements of the limbs;
· Frequent use of one limb to perform actions. For example, an ordinary child reaches for a toy with both hands with equal zeal. And it does not affect whether the baby is left-handed or right-handed. If he uses only one hand all the time, then this should alert the parents.
Children who were diagnosed during a routine examination minor violations, are examined every two to three weeks. During repeated examinations, attention is paid to the dynamics of motor changes (whether disturbances remain, decrease or increase), how motor reactions are formed, and so on.
Majority symptoms of cerebral palsy appear in the initial residual period, namely after six months of life. These symptoms include impaired movements, disturbances in muscle tone, mental development, speech, vision and hearing, swallowing, defecation and urination, the formation of skeletal deformities and contractures, and the presence of seizures.
Depending on the clinical form disease, certain symptoms of the disease will come to the fore.
There are four forms in total:
1) mixed;
2) dyskinetic (hyperkinetic);
3) ataxic (atonic-astatic);
4) spastic (hemiplegia, spastic dysplegia, spastic tetraplegia (double hemiplegia)).
Signs of cerebral palsy in a newborn up to one year old
Two months and older
1. There are difficulties in controlling the head when raising it.
2. The legs become stiff and may cross or become scissor-shaped when lifted.
3. Shaky or stiff legs or arms.
4. There are problems with feeding (the child has weak sucking, difficult bites in the position on the stomach or on the back, a stubborn tongue).
Six months and older
1. Continues poor head control when lifting.
2. The baby extends only one hand and clenches the other into a fist.
3. There are problems with eating.
4. The child does not turn around without outside help.
Ten months and older
1. The baby can move with difficulty, pushing off with one leg and arm and dragging one leg and arm.
2. The child does not babble.
3. He can't sit up on his own.
4. Doesn't react to his name at all.
One year or older
1. The child does not crawl.
2. Cannot stand without support.
3. The baby does not look for those things that are hidden in such a way that he can see them.
4. The child does not pronounce individual words, such as “dad”, “mom”.
Disability due to cerebral palsy
Disability for cerebral palsy is given not because of an existing diagnosis, but if the disease is accompanied by limitation of life activity. In this case, we mean limited abilities for movement, self-care, speech contact, and learning ability. Cerebral palsy has different degrees severity, but in many cases it leads to disability. This disease is not considered genetic, it is congenital. This is what makes it special.
What does disability give to children with cerebral palsy?
The main reason for calling for the registration of disability for a child with cerebral palsy is, which is carried out by the state. The funds are intended to purchase necessary medications and different means caring for a disabled child.
In addition to pension accruals, a child with a disability has the right to the following benefits:
1) benefits for travel on river, air and rail transport;
2) free travel in the city public transport(exception is taxi);
3) free sanatorium treatment;
4) free receipt of medicines in pharmacies according to prescriptions prescribed by doctors;
5) providing disabled people with the necessary medical equipment.
These rights are available not only to disabled children, but also to their mothers. This refers to a benefit when calculating tax payments on income received, the right to additional leave, reduced work schedule and immediate retirement. Benefits depend on what disability group the child is assigned to.
First group- the most dangerous. It is assigned to children who do not have the ability to perform independent care without assistance (dress, eat, move, and so on). Also, a disabled person does not have the opportunity to fully communicate with people around him, so he needs regular supervision.
For second group disability is characterized by certain limitations in the above manipulations.
Also in children who received second group, no learning ability. But there is an opportunity to gain knowledge in institutions specially designated for this purpose for disabled children with disabilities.
Third group assigned to disabled people who are able to individually perform movements, learn, and communicate. At the same time, children have a slow reaction, so additional monitoring is required for health reasons.
Registration of disability for cerebral palsy
As mentioned above, disabilities are assigned to children during the diagnosis of cerebral palsy. Mandatory assistance in documenting disability is provided by a doctor at the site. In addition, the doctor gives a referral for a medical examination. At the next stage (MSE), with the help of which the diagnosis is confirmed. During preparation for its passage, it is clarified how pronounced movement disorders, degree of violation of support, degree of damage to the hand, mental disorder, speech and other factors.
Parents must prepare the necessary documentation for those with cerebral palsy. The kit consists of: a referral received at the clinic, the results of the research, a passport of one of the parents, a birth certificate, an application, a certificate of registration from the housing office, photocopies of all necessary documents. In addition to the above, other documentation may be useful as confirmation general condition health (hospital notes or examination results).
Within about a month, parents must receive a certificate on the basis of which the child will be assigned a certain disability group. This document must be submitted to the Pension Fund in order to receive pension payments.
Thus, childhood illnesses can be quite serious, as in the case of cerebral palsy. If a child has this pathology, a higher authority must assign him a disability group. Disabled children have the right to free medical care and life-sustaining medications.
Except medical care Children with cerebral palsy also need pedagogical assistance. Also, parents and teachers should draw up a comprehensive one. It includes classes on teaching correct movements, massage, physiotherapy, work on simulators. The most important role of early speech therapy activities.
Is it possible to completely cure cerebral palsy in a child?
Cerebral palsy cannot be completely cured. But if you take timely measures, if parents and teachers behave correctly, you can achieve great success in acquiring skills and self-care.
How long do children with cerebral palsy live?
Parents who have encountered this serious diagnosis in their child are interested in the question: “How long do children with cerebral palsy usually live?” Back in the middle of the last century, patients with this disease did not even live to adulthood. Nowadays, a child diagnosed with cerebral palsy, with comfortable living conditions, proper treatment, care, and rehabilitation, lives to be forty years old and even to retirement age. It depends on the stage of the disease and healing process. If, during the disease, the activity of treatment, which is aimed at combating brain disorders, is reduced, this will significantly reduce the life expectancy of a child with cerebral palsy, as with any other disease.
Eighty percent of children with cerebral palsy are diagnosed at birth. The remaining part of patients receives a doctor's opinion during early infancy due to infectious diseases or brain injuries. If you work with these children all the time, it is possible to achieve significant development of their intelligence. Therefore, many can study in special institutions, and then get secondary or higher education and profession. The child’s life completely depends on the parents and permanent rehabilitation.
Unfortunately, in our time there has not been a single case of complete recovery from this disease.
03.11.2019
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