Families raising disabled children as a social problem. The main problems of families with disabled children. Moscow State Regional University

Family, immediate environment of the child with disabilities- the main link in the system of his upbringing, socialization, satisfaction of needs, training, career guidance. Material, financial and housing problems increase with the appearance of a disabled child. Housing is usually not suitable for a disabled child, every 3rd family has about 6 m 2 of usable space per family member, rarely a separate room or special devices for the child.

In such families, problems arise related to the purchase of food, clothing and shoes, the simplest furniture, and household appliances: a refrigerator, a TV. Families do not have what is absolutely necessary to care for a child: transport, summer cottages, garden plots, telephone.

Services for a disabled child in such families are predominantly paid (treatment, expensive medicines, medical procedures, massage, sanatorium-type vouchers, necessary devices and equipment, training, surgical interventions, orthopedic shoes, glasses, hearing aids, wheelchairs, beds, etc.). All this requires a lot of money, and the income in these families consists of the father’s earnings and child disability benefits.

Data show that among families with disabled children, the largest percentage are single-parent families. 15% of parents divorced due to the birth of a disabled child; the mother has no prospect of remarriage. Therefore, the problems of an incomplete family are added to the problems of the family of a child with disabilities.

Psychological problems. The psychological climate in the family depends on interpersonal relationships, the moral and psychological resources of parents and relatives, as well as on the material and living conditions of the family, which determines the conditions of education, training and medical and social rehabilitation.

There are 3 types of families based on the reaction of parents to the appearance of a disabled child: with a passive reaction associated with a misunderstanding of the existing problem; with a hyperactive reaction, when parents intensively treat, find “luminary doctors”, expensive medications, leading clinics, etc.; with an average rational position: consistent implementation of all instructions, advice from doctors, psychologists.

In his work, a social worker must rely on the positions of the 3rd type of family.

The appearance of a child with disabilities in a family is always a severe psychological stress for all family members. Often family relationships weaken, constant anxiety for a sick child, a feeling of confusion, depression are the causes of family breakdown, and only in a small percentage of cases does the family unite.

The father in a family with a sick child is the only breadwinner. Having a specialty and education, due to the need to earn more money, he becomes a worker, seeks secondary income and has practically no time to take care of his child. Therefore, caring for the child falls on the mother. Typically, she loses her job or is forced to work at night. Caring for the child takes up all of her time, and her social circle is sharply narrowed. If treatment and rehabilitation are futile, then constant anxiety and psycho-emotional stress can lead the mother to irritation and a state of depression. Often older children, rarely grandmothers, and other relatives help the mother in caring. The situation is more difficult if there are several children with disabilities in the family. Having a disabled child negatively affects other children in the family. They receive less attention, opportunities for cultural leisure are reduced, they study worse, and get sick more often due to parental neglect.

Psychological tension in such families is supported by psychological oppression of children due to the negative attitude of others towards their family; they rarely communicate with children from other families. Not all children are able to correctly assess and understand the attention of parents to a sick child, their constant fatigue in an oppressed, constantly anxious family climate.

Often such a family experiences a negative attitude from those around them, especially neighbors who are irritated by the uncomfortable living conditions nearby (disturbance of peace and quiet, especially if the disabled child has delayed mental development or his behavior negatively affects the health of the child’s environment). People around them often shy away from communication, and children with disabilities practically do not have the opportunity to have full social contacts or a sufficient circle of friends, especially with healthy peers. Existing social derivation can lead to personality disorders (for example, emotional-volitional sphere, etc.), intellectual delay, especially if the child is poorly adapted to life’s difficulties, social maladjustment, even greater isolation, developmental deficiencies, including communication disorders opportunities, which creates an inadequate understanding of the world around us.

Parents try to raise their child, avoiding his neuroticism, egocentrism, social and mental infantilism, giving him appropriate training and career guidance for subsequent work. This depends on the availability of pedagogical, psychological, and medical knowledge of the parents, since in order to identify and evaluate the child’s inclinations, his attitude towards his defect, his reaction to the attitude of others, to help him adapt socially, to achieve maximum self-realization, special knowledge is needed. Most parents note their lack of education disabled child, there is a lack of available literature, sufficient information, medical and social workers. Many families do not have information about the professional restrictions associated with the child’s illness, or about the choice of profession recommended for a patient with such a pathology. Children with disabilities are educated in regular schools, at home, in specialized boarding schools. different programs(general education school, specialized, recommended for of this disease, according to the auxiliary), but they all require an individual approach.

Medical and social problems. Medical and social rehabilitation of children with disabilities should be early, stage-by-stage, long-term, comprehensive, including medical, psychological, pedagogical, professional, social, domestic, legal and other programs, taking into account an individual approach to each child. The main thing is to teach the child motor and social skills so that in the future he can get an education and work independently.

All social work is focused on the child and does not take into account the characteristics of families, and the participation of the family in medical and social work is decisive along with specialized treatment.

Sometimes treatment and social assistance are carried out late due to late diagnosis. Most often, the diagnosis is made at 1 or 2 - 3 years of life; only in 9%, the diagnosis was made immediately after birth, at the age of 7 days (severe damage to the central nervous system and birth defects development).

Dispensary medical care does not provide for a clearly established stage (according to indications) - inpatient, outpatient, sanatorium. This principle can be seen mainly for young children.

Particularly low outpatient health care. It appears mainly when acute diseases and unsatisfactory profile in case of disability. Examination of children by specialized specialists, massage, physiotherapy, physical therapy, nutritionist does not solve nutritional issues during severe forms diabetes, kidney diseases. Insufficient provision medicines, exercise equipment, wheelchairs, hearing aids, prosthetics, orthopedic shoes.

When considering family planning, only a few parents decide to give birth again after having a child with disabilities.

Many socio-medical, psychological and pedagogical problems remain unresolved, including unsatisfactory equipment medical institutions modern diagnostic equipment, an insufficiently developed network of institutions rehabilitation treatment, “weak” medical-psychological services social work And medical and social examination disabled children; difficulty in obtaining a profession and employment, the lack of mass production of technical means for training, movement, and everyday self-service in children's boarding schools and home environments.

The government measures of demographic policy and assistance to families with children, including disabled children, carried out in Russia are fragmented, ineffective and do not take families into account as a whole.

1. Introduction 3
2. Problems of families with disabled people 3
3. Advisory assistance from a family nurse to patients and families with disabilities 7
4. Conclusion 9

References10

Introduction

Legislation Russian Federation in the field of social protection of the population, as in other areas of life, is largely of a declarative, formal nature.

Despite the fact that the Law of the Russian Federation “On social protection Disabled People in the Russian Federation" is a direct law; many of its provisions cannot be fully applied in the interests of people with disabilities.

This also applies to Article 17 of the federal law, according to which - “Disabled people and families with disabled children are provided with a discount of at least 50 percent on rent and utility bills...”

In accordance with the practice that has existed in Russia for many years, a full discount (50% of the entire housing area and the volume of utilities provided) is provided only to families with disabled children and disabled adults living separately. Unfortunately, the problem of providing discounts on housing and utility bills to disabled people living in families has not yet been resolved.

Problems of families with disabled people

The main problems faced by families of disabled people after the entry into force of the Federal laws “on the delimitation of powers of government”. There are many problems, but there are “pain points”, without solving which it is pointless to talk about the rehabilitation of a disabled child or a disabled person from childhood in the family. These are the problems:

education of disabled children and compensation of parents’ expenses for these purposes;
the amount of compensation payments and pensions for non-working parents and guardians caring for disabled people;
transport services for disabled people and the procedure for providing them with technical means of rehabilitation (TSR);
conducting a medical and social examination (MSE) and developing individual rehabilitation programs (IPR).

To solve them, you need to:

1) Establish a minimum guaranteed standard for the amount of compensation for the costs of parents for the purpose of raising and educating disabled children (including at home), based on which normative standards can be developed in the regions legal acts and establish a procedure for financing these obligations from the budgets of the constituent entities, guaranteeing equal rights for children with disabilities, regardless of their place of residence.

2) In order to improve the financial situation of families with disabilities and people with disabilities since childhood, it is necessary:

Increase the amount of compensation payments to parents caring for disabled children and people with disabilities since childhood;

Increase the size of the basic part of the old-age labor pension for persons who are dependent on disabled family members;

Review the procedure for establishing the right to early assignment of a labor pension to parents of disabled people since childhood.

3) In connection with the repeal of Art. 30 "Transport services for people with disabilities" in 181-FZ "On social protection of people with disabilities in the Russian Federation" - to recommend that the Government of the Russian Federation and the constituent entities of the Russian Federation develop appropriate regulatory and legal acts on compensation of insurance premiums under the agreement "On compulsory insurance of civil liability of owners Vehicle"and preferential transport tax for: families with disabled people with impaired musculoskeletal function and disabled people from childhood of group 1, owners of vehicles purchased at their own expense.

4) Simplify the procedure for providing disabled people with TSR at the expense of the federal budget (determined by decree of the Government of the Russian Federation of December 31, 2005)

5) Pay special attention to the development of a regulatory framework for the procedure for protecting the rights of children with disabilities and their parents, the procedure for appeals and compensation for damages in courts when conducting a medical and social examination and a psychological, medical and pedagogical commission developing IPR for disabled people and children - disabled people.

The procedure for raising and educating disabled children (including at home), as well as the amount of compensation for parents’ expenses for these purposes, are determined by the laws and other regulations of the constituent entities of the Russian Federation and are the expenditure obligations of the constituent entities of the Russian Federation. This requires the prompt development of regulatory legal acts and the establishment of a procedure for financing these obligations from the budgets of the constituent entities. Obviously, the training procedures and compensation amounts approved by the regions will differ significantly. But because the state guarantees equal rights of citizens regardless of their place of residence, it is necessary to establish a minimum guaranteed standard for the amount of such compensation in order to realize the rights of disabled children to upbringing and education.

The amount of compensation payments to parents caring for disabled children and people with disabilities since childhood must be at least doubled, since until the age of 50, non-working mothers of disabled children are forced to live on the disabled child’s pension and compensation payments, which amounts to an average of 2-3 thousand. rubles per month. Since these are funds allocated from the Federal budget, most regions refused to allocate funds from their budgets for benefits for caring for a disabled child (only 5 regions retained this measure social support).

For mothers of people disabled since childhood, whose pension was assigned before 2002, the period of caring for a disabled child is excluded, contrary to the Resolution of the Ministry of Labor of October 17, 2003. which amended Presidential Decree No. 551 of March 17, 1994 “On the amount of compensation payments to non-working able-bodied persons caring for disabled citizens.”

According to the Resolution of the Ministry of Labor of Russia "On some issues of establishing labor pensions in accordance with Articles 27, 28, 30 Federal Law"On labor pensions in the Russian Federation" (approved by the resolution of the Ministry of Labor of Russia dated October 17, 2003): when calculating the duration of the insurance period and (or) length of service in the relevant types of work to determine the right to an old-age labor pension (including early), in the specified length of service includes all periods of work and other socially useful activities, which were counted, respectively, in the general length of service and in the special work experience when assigning a pension according to the legislation in force during the period of performance of this work (activity).The rules for calculating length of service are also determined on the basis of previously existing legislation .

In violation of the rules for calculating the total length of service (for mothers of disabled children whose pension was assigned before 01/01/2002), on the basis of previously existing legislation, 173-FZ does not include in labor activity until 01/01/2002 the years of caring for a disabled child - clause 4 of Art. .thirty.

Starting from 01/01/2002 - upon reaching 50 years of age, mothers of disabled children (who raised them until they were 8 years old), who have the right to early assignment of a labor pension, are faced with another problem - inclusion in the insurance period of periods of care provided by an able-bodied person for a group I disabled person, a disabled child, if they have an insurance record of at least 15 years - which are included in the insurance record only if they were preceded and (or) followed by periods of work (for which he is subject to compulsory pension insurance, that is, for him in the Pension Fund of the Russian Federation arrive insurance premiums). But because Every second mother of a disabled child does not work, then her insurance record includes only the period of child care (no more than 3 years). As a result, the majority of mothers eligible for early assignment of a labor pension are assigned:

or a minimum labor pension (with the basic part of the old-age labor pension - 1200 rubles, if they are dependent on a group 1 disabled person),
or social pension (954 rubles).

And then the total income of such a family averages from 3 to 5 thousand rubles for two - this often “pushes” the mother to the decision to place a disabled child in a social protection institution.

It is obvious that Article 14, paragraph 1, paragraph 1, article 28, paragraph 4, article 30 of the current 173-FZ require appropriate additions - there is already a ruling of the Constitutional Court dated June 27, 2005 N 231-O (about fathers of children - disabled people).

By order of the Government of the Russian Federation of December 30, 2005 N 2347-r, the Federal List of rehabilitation measures, technical means of rehabilitation and services provided to disabled people was “expanded” by 10 units in 2006.

But the very procedure for providing disabled people with TSR at the expense of the federal budget (with mandatory re-examination by the ITU, annual provision of IPR, submission of documents to the Social Insurance Fund and obtaining numerous confirmations) is so complicated that it requires huge expenditures of health and time from parents. This procedure needs to be revised, limiting it, for example, to the recommendations of an orthopedic specialist (as in the case of referral for sanatorium treatment with the provision of vouchers by the same Foundation social insurance based on a certificate from the attending physician).

Federal Law 122-FZ excluded Article 30 “Transport services for people with disabilities” from the Law “On Social Protection of Disabled Persons in the Russian Federation”, and “special vehicles” were excluded from the Federal List: the most severe category of disabled people with disabilities was “outside” the current legislation.

Currently, disabled people and families with disabled children, if they purchase a car at their own expense, are not compensated for the costs associated with the operation of vehicles, and with the entry into force of Part 2 of Article 358 of the Tax Code (“Transport Tax”), they are required to pay and transport tax and carry out compulsory civil liability insurance (MTPL).

Taking into account the increased tax rates on motor vehicles (in all regions) and the amount of insurance payments, additional annual expenses in families of disabled people have increased by an average of 10-15 thousand rubles - an enormous burden for single-parent families with people with disabilities since childhood and disabled children.

But motor transport for disabled people and disabled children with impaired musculoskeletal system functions is the only means of transportation, and therefore the only means for realizing their rights to education, work, and active socialization. To solve this problem you need to:

1) Restore Article 30 “Transport services for people with disabilities” in 181-FZ “On Social Protection of Disabled Persons in the Russian Federation”, with the mandatory inclusion of part one (on travel on public transport). This issue was partially resolved: at the Government meeting on November 24, 2005. the issue of organizing preferential travel on public transport in urban and suburban communications for persons accompanying disabled people and disabled children was considered: an explanatory letter from the Ministry of Health and Social Development and the Ministry of Finance was sent to the constituent entities of the Russian Federation stating that travel for persons accompanying disabled people with the third degree of disability and disabled children on all types of public transport in urban and suburban traffic is provided by issuing a single ticket for 2 persons. The source of financing is funds allocated by the Government of the Russian Federation in the form of subsidies to ensure equal accessibility transport services privileged categories of citizens. However, in most regions of the Russian Federation such a ticket is sold at a discounted price.

2) Invite the constituent entities of the Russian Federation to come up with a legislative initiative:

On introducing amendments to the relevant articles of the laws "On transport tax" in the constituent entities of the Russian Federation, adding a subparagraph on them tax benefits(up to 50% of local tax rates) for: disabled people from childhood, group 1, owners of vehicles purchased at their own expense, and families with disabled children with impaired musculoskeletal function.

On the establishment of preferential rates when paying for an insurance policy under the law “On compulsory insurance of civil liability of vehicle owners” (40-FZ of April 25, 2002 OSAGO) - 1) not only in accordance with paragraph two of paragraph 1 of Article 17 184-FZ 5, 2 ) but also in accordance with? 181-FZ, which gives the right to constituent entities of the Russian Federation to take their own measures of social support for certain categories of citizens.

New Classifications and temporary criteria used in the implementation of medical and social examination of citizens by federal government agencies medical and social examination, approved by Order of the Ministry of Health and Social Development No. 535 of August 22, 2005, can become a kind of mechanism for discrimination against disabled children and young disabled people of the first group, because it is determined when establishing III degree limitations of various abilities, or rather inabilities: to work (with the wording “inability to work”), to training, orientation, communication, etc. In reality, such disabled people are also deprived of the right to sanatorium-resort treatment, because everywhere ITU Bureau in cards individual program rehabilitation (IPRI) for people with disabilities since childhood, a dash is placed in the corresponding columns

Therefore, it is necessary to pay special attention to the development of a regulatory framework for the procedure for protecting the rights of children and their parents, the procedure for appeals and compensation for damages in courts when conducting a medical and social examination and a psychological, medical and pedagogical commission developing IPR for people with disabilities and disabled children.

Advisory assistance from a family nurse to patients and families with disabilities

Family medicine is medicine in which the doctor and nurse provide primary, continuous and comprehensive medical care not only to the patient, but also to his family members, thus, family medicine covers people of all age groups. Knowing your patients well, family doctor and the nurse see changes in their health that other specialists, as a rule, may not pay attention to. That is why the role of the “team” as a whole is so important in primary care, i.e. doctor and nurse. The main differences in the work of a nurse general practice from the activities of the local nurse are: close contact with the families of patients, preventive focus of actions, constant assessment (on the basis of which work is planned), improvement of practical skills and constant increase in the level of professional knowledge. A general practitioner nurse performs the following functions:

conducts classes (using specially developed methods or a plan drawn up and agreed upon with the doctor) with various groups patients. For example, “patient schools” - (school - bronchial asthma, diabetes mellitus, arterial hypertension). The tasks of the nurse leading classes in these schools are to give the patient the necessary information about the disease and possible complications, identify the main problems (physiological, psychological, social) associated with the patient’s reaction to pathological process, outline a program of activities and teach the patient to make the necessary decisions in specific situations, teach an algorithm for self-examination, for example, in women, in order to identify early diagnosis breast diseases. The purpose of the training is to increase periods of remission, reduce complications, stabilize the course of the disease, and therefore reduce treatment costs and, accordingly, improve the quality of life.
provides advisory assistance to patients and their family members on issues of maintaining and promoting health, medical and social assistance. Teaches patients self-control and self-help at the first symptoms of deterioration in health, and teaches family members how to care for seriously ill patients.
organizes and conducts hygienic training and education of the population, preventive actions- immunoprophylaxis, preventive measures infectious diseases etc.

Today nurse general practice requires knowledge of age, social and medical psychology, pedagogy, management, law. Need to know modern methods prevention, be able to correctly plan health promotion activities, perform basic medical procedures efficiently, organize care for patients with various types pathology at home, and this requires special professional training and advanced training. A family sister must be able to:

Identify the main problems of the family different stages her life cycle related to the preservation and promotion of health;

Identify the main socio-economic, cultural and religious problems of the family that affect the health of its members;

Provide advisory assistance to families at different stages of their development to foster the need for healthy way life, maintaining and strengthening health, overcoming crisis situations;

Assess the level of family health, plan measures for its improvement;

The state of public health has always been an important social problem. The deterioration of its indicators in our country is associated with the difficult economic situation, a significant decrease in funds allocated to health authorities, the insufficient efficiency of medical technologies, the irrational structure of the medical care system, the prevalence of risk factors, the lack of effective disease prevention and the low quality of primary health care.

Bibliography

1. Vinnichuk N.N. and others. Organization of medical support for the population in emergency situations M., 2003. - 200 p.
2. Organization and methodology for developing an individual rehabilitation program. Compiled by: Prof. M.V. Korobov, associate professors Zh.G.Deneva, T.N. Shelomanova. St. Petersburg 2004
3. Svistunova, E. G. Medical and social rehabilitation of disabled people: professional aspects / Medical and social. examination and rehabilitation. 2003. N 2. - P. 6-12
4. Semenov V.Yu. Health Economics. ICFER, 2004. 649 pp.

Families with disabled children need special attention and care from the state. The presence of a child with disabilities in the family creates additional difficulties not only financially, but also psychologically.

Understanding the typological characteristics of families with disabled children and their problems is important for effectively building a system of social support for this category of families. And here a lot depends on the professionalism of social workers called upon to provide assistance to families with disabled children, to help provide them with the necessary tools, knowledge, and skills.

Typology and main problems of families with disabled children

Families with children with disabilities occupy an important place in the social protection system. A distinctive manifestation of disability is a health disorder with persistent disorders of body function caused by diseases, consequences of injury or congenital defects.

Disabled children include minors who have significant limitations in their life activities, leading to social maladjustment due to disruption of the child’s development, growth, ability for self-care, movement, orientation, control of their behavior, learning, communication, play and future work activities. A child, being disabled, faces difficulties in meeting the needs of his personal and social life. In current conditions, taking into account the expediency of transition to more humane terminology, instead of the concept of “disabled person,” the concept of “person with disabilities” is increasingly used. Defectologists in Germany use phrases such as “children with disabilities” or “children with educational difficulties” to refer to disabled children.

Unlike adults, a disability group is not established for children. Status disabled child is established until the age of 18 or until health conditions improve. After reaching adulthood, such a child may be recognized disabled since childhood(1,2 or 3 groups).

The regulatory documents define objective criteria for recognizing a child as disabled. These include: health problems and dysfunction caused by disease, injury or defects; limitation of life activity - this includes complete or partial loss of the ability to care for oneself, work, communicate, move and perform other activities; need for assistance, social protection and (or) rehabilitation.

Estimated World Organization Health (WHO) in the world about 15% of the population are disabled. In the Russian Federation, according to the Social Information Agency, there are at least 15 million disabled people, including those who are not registered. According to official data, there are about 13 million people.

If we consider the number of disabled people of one category or another, then in our country for last years their order does not change. In percentage terms, the largest number of disabled people Group III- 43.2%. The number of disabled people of group II is significant - 40.9%. The number of disabled people of group I is equal to 15.9% of the total number of disabled people.

With regard to the disability of children and adolescents, statistics show their growth over Lately. In 2009, there were about 520 thousand disabled children in the Russian Federation, in 2010 - 541 thousand, in 2012 - 568 thousand people, in 2015 - 612 thousand people. According to the press service of the Russian Pension Fund, by the beginning of 2017, there were 617 thousand disabled children in our country, and 203 thousand people with disabilities from childhood of the 1st group. This dynamic not only confirms trend of increasing number of children with disabilities in our country, but also testifies to its sustainability.

Childhood disability in modern Russia has some gender characteristics. Among disabled children, 58% are boys and 42% are girls. 1

Diverse causes of childhood disability. TO the main ones include:

- environmental problems in many areas of the country;
- violation of sanitary and hygienic standards in a significant number of enterprises with high female employment;
- malnutrition of a certain part of pregnant women, their nervous overstrain;
- heredity;
- smoking, alcohol and drug use by some pregnant women;
- birth and other traumas of children, consequences of violence, etc.

Manifestations environmental problems are pollution of the atmosphere and water sources. In a number of areas of the country, increased background radiation is observed. The increased content of nitrates in many food products has become widespread.

In 150 cities of the Russian Federation, the concentration of harmful substances in the atmosphere at the turn of the XX-XXI centuries. exceeded permissible limits five times, and in 86 cities - ten times. About half of the country's population uses water for drinking that does not meet hygienic requirements. wide range quality indicators. Almost all bodies of water located near Russian cities are polluted by industrial waste and, to one degree or another, are dangerous to the life and health of people.“ Under such conditions, the risks of children with disabilities increase. congenital pathologies.

The practice has a negative impact on the health of infants violations of sanitary and hygienic standards in a significant number of industries with high female employment. In some workshops, where mostly women work, there are fumes that are harmful to health. chemical compounds, observed increased level noise, vibration, radiation, etc.

Of the 30 million working Russian women of childbearing (fertile) age at the beginning of the 21st century. almost 10% (2.7 million) worked in conditions that did not meet sanitary and hygienic requirements. According to some authoritative scientists (Professor N.F. Izmerov and others), this is the main reason for the birth of disabled children. “Hence,” noted Izmerov, “the congenital deformity in their children.” 1

The number of representatives of the fair sex working in difficult and harmful conditions is declining extremely slowly in our country. Thus, women employed in heavy manual work in industry make up 20%, in construction - over 25%, in workshops with heavy and harmful conditions labor - 27%.

Affects the intrauterine development of the unborn child the nature of the diet of pregnant women, their emotional and psychological state. It is important that pregnant women eat well. In their diet, they should not lack calcium and vitamin components such as folic acid, riboflamin, thiamine, etc. Otherwise, a child may be born with low body weight and congenital pathologies. The likelihood of having an unhealthy child increases if during pregnancy the woman was often irritated or worried stressful state.

The birth of a disabled child may also be associated with hereditary factor. Moreover, negative heredity is determined not only by the maternal, but also by the paternal side. Misunderstanding of this circumstance often manifests itself in the stereotypical male opinion that only the mother is to blame for the child’s disability, since it was she who carried him and gave birth to him.

The birth of children with disabilities may also be associated with the future mother's use of alcohol and drugs. Sometimes an unwanted child also becomes disabled when, after conception, a woman tries unsuccessfully to terminate the pregnancy by drinking various infusions, using active heat, etc. All this negatively affects the development of the fetus, which manifests itself after birth.

Some children become disabled due to various injuries, due to violence, including domestic violence and other circumstances. Currently, some employers actively use the labor of children and adolescents, especially from dysfunctional families. This often happens in violation of current legal regulations. However, the cheapness of their labor makes it in demand.

A certain number of children become victims of military conflicts. This is confirmed by sad statistics: for every child killed in armed conflicts, there are three wounded children who acquire a permanent form of disability. 1

The increase in childhood disability in Russia in recent years is explained not only by the above factors, but also by some regulatory circumstances. Thus, new live birth standards have come into effect in our country. They allow the birth of children with extremely low body weight. And this, naturally, increases the risk of childhood disability.

For a disabled child, the family is a support in the process of his rehabilitation and socialization. Currently, the overwhelming majority of Russian disabled children (about 88% of the total) are raised in families, which actualizes the need for scientific and theoretical understanding of the classification of these families and the specifics of their problems.

The typology of families with children with disabilities is determined by criterion diversity. If the nature of the child’s disability is taken as a basis, then such families can be divided into the following types:

- a family with a child experiencing psychoneurological diseases;
- a family with a child whose disability is determined by illness internal organs;
- a family with a disabled child experiencing problems with the musculoskeletal system;
- a family with a child whose disability is determined by visual and hearing impairments;

Of the total number of disabled children living in Russia, the majority are people with psychoneurological diseases. They make up 60% of the total number of children experiencing significant limitations in their life activities. Another 20% of disabled children are due to diseases of internal organs, 10% to diseases of the musculoskeletal system and, finally, 10% to visual and hearing impairment. 1

The criterion for the typology of families with disabled children can be: parents' reaction to disability. In this case, we can distinguish the following types families with children with disabilities: a) passive family with a disabled child; b) hyperactive family; c) a rational family raising a disabled person.

IN passive family parents misunderstand the problem, believing that their unusual child should not be treated special attention that he will “outgrow”, etc. IN hyperactive family On the contrary, they are constantly trying to treat a disabled child, attracting more and more specialists, buying expensive medicines, using various unconventional methods recovery. Finally, in rational family parents try to calmly perceive the current situation and actively interact with a doctor, psychologist and other specialists helping the child.

The third type, the rational family, is more preferable to ensure the normal process of development and socialization of a disabled child. This means, as E.I. rightly asserts. Zritnev and N.P. Klushin, an important task for specialists in social

Our work is to help bring every family with children with disabilities to its rational type.

IN real life The leading role in caring for a disabled child belongs to the woman - the mother. Therefore, families with children with disabilities can be legitimately classified as in accordance with the personal and behavioral type of the mother. Taking this approach into account, the following types of families with disabled children can be distinguished: a) neurotic type; b) authoritarian type of family with a disabled child; c) psychosomatic family type; d) tolerant type of family with a disabled person.

For neurotic type of family with a disabled person a certain personality-behavioral model of the mother is characteristic. In the book “Protecting Children from Brutal Violence,” prepared under the editorship of E.N. Volkova, the features of this maternal behavioral model are given.

Delhi. Its manifestations include: a passive personal position and justification of one’s own inactivity regarding the child’s development; failure to understand that some deficiencies that arise in a child are secondary and are the result not of a biological defect, but of the mother’s personal failure; the desire to protect the child from all problems, even those that he can solve on his own; weakness and inertia in the implementation of the educational goal; a constant anxious background of mood, the presence of excessive fears about something that is transmitted to the child and can cause the formation of neurotic character traits in him. 1

Authoritarian type of family with a disabled child corresponds to the authoritative personal-behavioral model of the mother herself. According to psychologists, such a woman is characterized by: an active life position, the desire to be guided by her own beliefs, contrary to advice from outside (relatives or specialists); inability to restrain anger and irritation, lack of control over the impulsiveness of one’s actions, tendency to participate in quarrels and scandals; sometimes allowing coldness or detachment from the child’s real problems; the use of often harsh forms of punishment (shouting, suppression of personality, and even beating).

Psychosomatic type of family with a disabled child includes some manifestations of neurotic and authoritarian family types. According to experts, a psychosomatic family is characterized by frequent changes in the polar moods of the mother from insane joy to deep depression caused by an insignificant circumstance.

For tolerant type of family with a child with disabilities, characterized by the mother’s desire to accept the child as he is, encouraging him to master the necessary social roles and functions, as well as solve feasible problems. This behavioral model of the mother assumes her ability to restrain her natural emotions and impulsiveness, to encourage and psychologically support her special child.

As already noted, families with disabled children experience additional difficulties and problems. To the number main problems These families include:

material and housing support;
psychological stress of the spouses, sometimes leading to stress and loss of family stability;
pedagogical failure of some spouses;
difficulties in finding employment for family members who have a disabled person;
medical support for families with a disabled child

In families with children with disabilities, it is much more difficult to maintain material income compared to families with healthy children. According to some data, maintaining a disabled child costs their families three times more than in the case of a healthy child. 1

Many families with disabled children do not have enough financial resources to purchase even the necessary products, clothing, medicines, etc. This is evidenced by sociological surveys. One of them is a study conducted at the turn of the XX-XXI centuries. Professor E.R. Smirnova - Yarskaya. She interviewed 127 parents with children with disabilities at the Saratov Regional Rehabilitation Center. When asked whether your family has enough financial resources to take care of a sick child, 50% of men and 66% of women surveyed clearly said “no,” and 50% of men and 30% of women believed that they were unsure of the sufficiency of financial resources . Only 4% of women and 0% of men answered that yes, they have enough financial resources to take care of a child.

More low level of financial support for families with disabled children due to certain circumstances. The main ones include: a) expenses of spouses for the purchase of medicines, auxiliary technical equipment for a disabled child, payment for consultants, massage therapists, etc.; b) the forced non-participation of the majority of mothers in social production, their periodic registration of leaves without pay for the purpose of treatment and improvement of the child.

In many families Due to the birth of a disabled child, living conditions worsen. After all, there is a need for a special room for it. Often, moving a child around the apartment and performing rehabilitation exercises require expanding the living space. According to T.S. Zubkova and N.V. Timoshina, the majority of Russian families with a disabled child live in housing that is not suitable for this purpose. Every third such family has only about 6 m2 of usable space per family member. A small living space poses a threat to health and well-being nervous system family members.

The next important problem for a family with a disabled child is is the psychological stress of the spouses, often leading to stress and sometimes to family breakdown. This state is formed under the influence of such circumstances as, firstly, anxiety for the fate of a disabled child, and secondly, the need to solve several problems related to the child’s life support; thirdly, negative perception of the child’s physical (mental) disabilities on the part of some people around him.

For parents of a disabled child and especially for mothers Sometimes a feeling of one’s own guilt for what happened is formed. This feeling often affects the parent’s perception of the world around them. According to the observations of the famous sociologist of family problems A.I. Kravchenko, such mothers may change their posture, as if they want to take up less space; they have a special, constrained gait, and do not have a loud voice.

They are always constrained in everything. Guilt is dangerous because it provokes resentment; it can also turn into anger and become a source of depression.

The difficult psychological state of the mother of a disabled child is well shown in one of the interviews given in the book “Family Psychology: Life Difficulties and Coping with Them.” The mother of a four-year-old boy with visual pathology (medical diagnosis - rhinopathy) noted in her interview: “Then I was offended: “But why me?” Of course, I was angry with the doctors. There are thousands of alcoholics and drug addicts and - well, thank God, of course - normal children are born. And from the first day I was planning a pregnancy, and a full range of vitamins... I was very worried about everything, while everything was aching in my soul. Of course, she looked terrible at that moment. She cried a lot. There were moments when the tears just flowed and that was all, and I was swaying from side to side. I just closed myself off at that moment. I didn't listen to anyone. So they came and sympathized, but that didn’t make me feel any better. The pain is mine, it will still remain with me. It's not that I'm embarrassed that my child has problems, I'm just not

I wanted to explain something. I didn’t want my child’s name to be touched for good or bad reasons.” 1

State of permanent Psychological stress in families with disabled children can provoke their disintegration. It is often preceded by a stable state of stress, which is experienced most painfully by the father. He ceases to see any positive prospect for the development and socialization of a disabled child, and begins to regard his situation as hopeless, a dead end. The situation is aggravated by the fact that his wife devotes almost all her time and attention to a child with disabilities, involuntarily distancing herself from her husband. This is painful for him. As a result, a man begins to feel out of place in his family and sometimes leaves it, not seeing any other way out of such a “hopeless” state. Statistics for many regions of the Russian Federation confirm this sad trend. For example, according to data at the beginning of 2007 in the city of Abakan, 30% of men who had children with disabilities could not withstand the psychological stress and ongoing difficulties and left the family.

Prominent Russian scientist, professor of psychology S.A. Belicheva, in one of her articles, pointed out that often in families with disabled children, fathers get divorced. “Fathers,” she wrote, “most often cannot withstand the psychological and material hardships associated with raising a disabled child.”

The general statistics of divorces of families with disabled children is also sad. According to V. Kaydachakova, due to a number of circumstances, including a permanent state of stress, about 58% of such families break up in the Russian Federation.

A serious problem for a number of families with disabled children is pedagogical failure of some spouses. She appears Firstly, in the absence of persistence and consistency in raising and teaching your special children, in the desire to perform some self-care functions for them, Secondly, in weakening attention to another - healthy child and etc.

Certain difficulties arise for parents in connection with preparing a disabled child for school, especially when teaching him at home. It is not easy for parents to develop self-care skills, mobility skills, and the use of assistive technology in their children with disabilities.

The presence of a disabled child in the family sometimes has a difficult impact on other children when they are in the family. In such a situation, healthy children receive less attention and their leisure opportunities are limited. Often, parents demand that a full-fledged child give in to their sick brother (sister) in everything, take care of him (her) in every possible way, and not react or complain about the latter’s (last) wrong actions. As the authors of the book “Psychodiagnostics and Correction of Children with Disorders and Developmental Disabilities” rightly note, all this affects the child’s character, and sometimes leads to a nervous breakdown. 1 Therefore, it is not surprising that in every tenth family with a disabled person, the mother notes an indifferent or even hostile attitude of the healthy child (children) towards the sick one.

The next problem for families with children with disabilities is employment of mothers and disabled teenagers themselves (at their request). The realities of modern Russia are such that home-based forms of work are not sufficiently developed. And the heads of most enterprises and institutions are in no hurry to establish flexible work schedules for women with children. After all, for them this is unnecessary trouble, which the state does not compensate for in any way. According to a number of researchers (N.V. Yalpaeva, P.D. Pavlenok, M.Ya. Rudneva, etc.), at the beginning of the 21st century, of the total number of women with disabled children, only 11.7% could work part-time .

In some regions of the Russian Federation, there is a practice of placing quotas on jobs for women raising disabled children. Such experience has been accumulated in Astrakhan, Kursk and some other regions of the country.

No less pressing than finding employment for a mother who has a disabled person in the family is problem vocational training disabled people themselves with their subsequent employment. Most families with disabled people experience an acute problem in obtaining additional professional education for their special needs children without leaving the family. However, in this case there is also positive experience. At the turn of the XX-XXI centuries. in Moscow professional education for children and adolescents with disabilities was conducted in 13 specialties. 1 There was a special program in the capital to create jobs for disabled teenagers.

It should be noted that the inclusion of disabled people in work is not only a means of improving their financial situation, but also most important factor socialization and self-affirmation. According to numerous sociological surveys, the most high level Satisfaction among persons with disabilities was demonstrated by those who had a job and wanted to work, as, by the way, by those who did not work and did not want to work. Those disabled people who did not work, but wanted to work, and those who did not want to work, but were forced to work, considered themselves unhappy.

A problem for many Russian families with disabled children is medical support. As evidenced by a number of sociological studies conducted in various regions of the Russian Federation, one of the priority problems of families with children with disabilities is their receipt of comprehensive medical care. For example, during sociological survey, conducted in 2006-2007. in the Republic of Bashkortostan, students of the RGSU branch in Ufa interviewed families with disabled people. Of the total number, 69% named the need for necessary medical care as one of their main problems.

Difficulties in the process of medical and social rehabilitation of disabled children often arise due to untimely diagnosis. Materials from one of the sociological studies on this problem indicate that out of 243 surveyed families with a disabled person, only 9.3% had an accurate diagnosis of pathology made immediately after birth, at the age of 7 days (severe lesions of the central nervous system and congenital malformations). Most often, such children are diagnosed in the first and even second or third year of life. Consequently, a lot of time for treatment is already lost, which complicates the process of social rehabilitation.

Knowledge of the main problems of families with disabled children and timely assistance to them from specialized services is the key to the success of the social rehabilitation of such children. Only systematic interaction between social institutions and members of families with children with disabilities can ensure desired effect rehabilitation process and their socialization in general.

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Everything in Russia more people need government help. Serious demographic and social consequences are threatened by an increase in the number of single-parent families, families with disabled people, an increase in the scale of social orphanhood, crime, alcoholism, drug addiction, and prostitution.

The most acute social problems of the family are expressed today in the sharp socio-economic stratification of society, when at one pole there are 35% of the poor, including 10% of the simply poor, at the other - 10% of those who have benefited from the ongoing economic transformations, including a stratum of 3-5% very rich people; in constant shortage state budget and the impossibility of social and geographical mobility; in migration, including outside the state (in Russia today there are about 3 million refugees and forced migrants, both legal and illegal); in the deterioration of the health of the population, including families, the demographic situation, manifested in natural population decline; in fundamental changes in the traditional roles of family members, especially women; in the increase in the number of families with disabled people; in increasing the dependency ratio; in domestic violence; social orphanhood and much more. P.D. Pavlenok, Fundamentals of social work, M., INFRA-M, 1999 P. 147

Disabled people in the Russian Federation have all the socio-economic and personal rights and freedoms enshrined in the Constitution of the Russian Federation, the constitutions of its constituent republics, and other legislative acts ( Appendix D). However, a change in the social status of a disabled person associated with the cessation or restriction of labor and social activities; transformation of values, lifestyle and communication; experiencing difficulties in social, everyday and psychological adaptation to new conditions, gives rise to serious social problems.

There are a number of unresolved problems of people with disabilities and their families. These include:

1. Social and medical:

outpatient treatment;

conducting medical examinations;

placement in specialized medical rehabilitation centers;

medication and treatment support;

health;

social patronage;

shortage of specialized specialists (neuropathologists, psychologists, defectologists).

2. Social and psychological:

self-realization;

mental disorders;

depression;

not in demand by society;

inferiority complex;

isolation;

adaptation to the surrounding world;

need for communication.

3. Social and pedagogical:

education;

isolation in boarding homes, specialized educational institutions;

limited social circle;

problem of interpersonal relationships;

formation of self-esteem;

feeling of internal discomfort.

4. Social and legal:

legal illiteracy;

receiving benefits, pensions;

registration of disability;

poor legal framework;

lack of knowledge about services providing legal assistance.

5. Socio-economic:

material support;

low standard of living.

6. Social and household:

housing conditions (number of floors, lack of amenities);

inaccessibility of the architectural environment;

telephone communication;

delivery of food and medicine;

organization of leisure;

need for apartment cleaning and repairs;

lack of technical means.

7. Employment.

8. Social services.

Causes of social problems of disabled people and their families. First of all, these are social problems: insufficient forms of social support, inaccessibility of healthcare, education, culture, consumer services, lack of an appropriate architectural environment, etc.

Social policy in Russia, aimed at disabled people, adults and children, is built today on the basis of the medical model of disability. Based on this model, disability is considered as an ailment, disease, pathology. Such a model, wittingly or unwittingly, weakens the social position of a person with a disability, weakens his social significance, isolating him from a normal healthy society, aggravates his unequal social status, condemning him to the recognition of his inequality, lack of competitiveness in comparison with other people Konoplena L.L. “Living as a disabled person, but not being one.” - Ekaterinburg, Ural State University, 2000.S. 41. .

The medical model also determines the methodology for working with disabled people, which offers treatment, occupational therapy, and the creation of specialized services.

The consequence of the orientation of society and the State towards this model is the isolation of a person with disabilities from society in a specialized educational institution, the development of a passive-dependent orientation.

The problem of disability is not limited to the medical aspect, it is much more to a greater extent is a social problem of unequal opportunity.

Low outpatient medical care. Examination of a disabled person by specialized specialists, massage, physical therapy, and physical therapy are at a low level. There is an insufficient supply of medications, exercise equipment, wheelchairs, hearing aids, prostheses, and orthopedic shoes.

Many social, medical, psychological and pedagogical problems remain unresolved, including the unsatisfactory provision of medical institutions with modern diagnostic equipment and an insufficiently developed network.

Among them are problems various levels: macro-, meso-, micro level. First-order social problems are problems affecting society as a whole.

The complex of these problems is being solved by the efforts of the entire society and the state aimed at creating equal opportunities for all people with disabilities. One of the most significant problems of this order is the attitude of society and the state towards persons with developmental disabilities. This attitude is manifested in various aspects: in the creation of a system special education, training, in creating an architectural environment, in creating an accessible healthcare system, etc.

The most acute problem is the limitation of life activities of disabled people. Limitation of life activity is understood as the complete or partial lack of a person’s ability or ability to carry out self-care, movement, orientation, control over one’s behavior, as well as to engage in labor activity Kovaleva A.I. Personality socialization: norm and deviation. - M., 1996.S. 10. .

Depending on belonging to a particular group, issues of employment and organization of everyday life are resolved. Slightly mobile disabled people (able to move only with the help of wheelchairs or on crutches) can work from home or have them transported to their place of work. This circumstance causes many additional problems: equipping a workplace at home or at an enterprise, delivery of orders to the home and finished products to a warehouse or consumer, material, raw materials and technical supplies, repairs, maintenance of equipment at home, allocation of transport to transport a disabled person to work, from work, etc.

The situation is even more complicated with immobile disabled people who are bedridden. They cannot move without assistance, but are able to work mentally: analyze socio-political, economic, environmental and other situations; write articles, works of art, create paintings, engage in accounting activities, etc. Benefits for employers: employment of disabled people. Public Relations Committee of the City of Moscow. M., 2004.S. 39.

If such a disabled person lives in a family, many problems can be solved relatively simply. What if he's lonely? Special workers will be required who would find such disabled people, identify their abilities, help receive orders, conclude contracts, purchase the necessary materials and tools, organize sales of products, etc. It is clear that such a disabled person also needs everyday care, from early toileting to provision of food. In all these cases, disabled people are helped by special social workers who receive wages. Blind but mobile disabled people are also assigned workers paid by the state or charitable organizations.

Public associations created and operating in order to protect the rights and legitimate interests of people with disabilities, providing them with equal opportunities with other citizens, are a form of social protection for people with disabilities. The state provides assistance and assistance to public associations, including material, technical and financial assistance. Federal Law of 01/04/1999 5-FZ), 15 Laws of the Russian Federation “On Refugees”, “On Forced Migrants”, “On Social Protection of Disabled Persons in the Russian Federation” // Collection of legislation. 1995. .

Federal executive authorities, executive authorities of constituent entities of the Russian Federation, organizations, regardless of organizational and legal forms and forms of ownership, attract authorized representatives of public associations of disabled people to prepare and make decisions affecting the interests of disabled people. Decisions made in violation of this rule may be declared invalid in court.

Main regulatory documents for designing an accessible living environment for people with disabilities are building codes and regulations (SNiPs), as well as departmental building codes and regulations (VSN). Removing urban planning barriers for people with disabilities creates conditions to facilitate their movement. These conditions include the installation of pedestrian paths, their coverings, the installation of ramps and special stairs, and the allocation of places for personal vehicles of disabled people.

The legislative basis for creating an adequate living environment accessible to disabled people is Decree of the President of the Russian Federation of October 2, 1992 No. 1156 “On measures to create an accessible living environment for disabled people.” In pursuance of Decree of the President of the Russian Federation of October 2, 1992 No. 1156, the Government of Russia adopted Resolution No. 245 of March 25, 1993 “On measures to create an accessible living environment for people with disabilities.” In order to strengthen control over the implementation of Decree of the President of the Russian Federation of October 2, 1992 No. 1156 "On measures to create an accessible living environment for people with disabilities" and in pursuance of the resolution of the Council of Ministers - Government of the Russian Federation of March 25, 1993 No. 245 "On measures to create "Accessible living environment for disabled people" adopted Decree of the Government of the Russian Federation of August 12, 1994 No. 927 "On ensuring the formation of an accessible living environment for disabled people."

This resolution provided for the introduction before October 1, 1994. in departmental regulations in the construction industry requirements for conducting a mandatory examination of design and estimate documentation for the development of cities and other settlements, construction and reconstruction of buildings and structures in terms of ensuring their accessibility for people with disabilities, as well as introducing the necessary amendments to the Law of the Russian Federation of December 17, 1992 No. 4121-1 "On administrative liability of enterprises, institutions, organizations and associations for offenses in the field of construction."

In 1993, the Concept of social protection of disabled citizens, families with minor children and other groups of the population of the Russian Federation in need of state support was approved at a meeting of the Government of the Russian Federation on November 24, 1992 (No. 35).

This document establishes the importance of creating conditions for unhindered access of people with disabilities to social infrastructure when granting the right to the Ministry of Social Protection of the Population of the Russian Federation and enshrining this right in the relevant legislative and regulatory acts.

Issues of an accessible living environment for people with disabilities are spelled out in the Law “On Social Protection of People with Disabilities in the Russian Federation” (Articles 15, 16).