Medical and social support for children with disabilities in hospitals

Gavrilova Irina Sergeevna ORCID: 0000-0002-4175-5499 PhD in Philosophy Associate Professor, Department of Medical and Social Technologies, Volgograd State Medical University 400066, Russia, Volgograd region, Volgograd, Fallen Fighters Square, 1, 1 gavrilova.irene@yandex.ru Other publications by this author

Introduction. People with disabilities are a vulnerable group of the population, which is given great attention in the modern world not only by the state, but also by society. A special category consists of children with disabilities and disabilities (hereinafter, HIA). It is necessary to distinguish between children with disabilities – an individual with disabilities in physical and (or) psychological development, confirmed by the psychological, medical and pedagogical commission and preventing education without creating special conditions (Federal Law No. 273-FZ (part 16 of Article 2). A disabled child, a disabled person from childhood or a disabled person is a person who has a health disorder with a persistent disorder of bodily functions caused by diseases, the consequences of injuries or defects, leading to a restriction of vital activity and causing the need for his social protection (Federal Law No. 181–FZ of November 24, 1995 "On Social protection of disabled people in the Russian Federation" (Article 1). Depending on the degree of impairment of bodily functions and disability, persons recognized as disabled are assigned a disability group; persons recognized as disabled under the age of 18 are assigned the category "disabled child". Social institutions that are poorly correlated with each other, but united by the institution of the family, act as subjects of law enforcement.

Modern social changes, which, according to V.A. Yadov, force social institutions to react promptly, so that the norms and rules of social interactions are formed in relation to the interests and needs of interacting subjects, moreover, those of them that have a powerful resource potential and determine the "agenda" ^{[2, p. 576]}.

That is why we have studied the phenomenon of medical and social support for children with disabilities and with disabilities in hospital and semi-hospital settings as a reaction to a range of needs that the patient cannot satisfy on his own.

Discussion. The relevance of using the technology of medical and social support is due to its potential to increase the effectiveness of treatment and rehabilitation measures, maintain a habitual lifestyle or change the most comfortable for the patient, preserve or improve the patient's quality of life. The study revealed that the medical and social needs of children with disabilities and with disabilities and their families generally look like this: medical (the need for treatment, recovery, supportive therapy, etc.), socio-pedagogical (teaching parents to interact with a disabled child in relation to, for example, sanitary and hygienic manipulations), leisure (the child's need to know the world around him through play, fairy tales, competent social behavior as a prevention of rental behavior, etc.), socio-psychological (the need for support in possible crisis or difficult life situations).

In order to specify the needs of the study group, parents (legal representatives) were interviewed for satisfaction with comprehensive medical and social support for children with disabilities and with disabilities, as well as a questionnaire for children over 14 years old and their parents (legal representatives) to identify needs on the basis of the State Educational Institution of the Krasnodar Territory "Novorossiysk Regional Comprehensive Rehabilitation Center children and adolescents with disabilities", where rehabilitation activities are carried out in a stationary and semi-stationary form.

The study of the technology of medical and social support for children with disabilities and with disabilities and its effectiveness involves a number of consistent actions. The first is the analysis of documents on the specifics of the implementation of medical and social support for children with disabilities and with disabilities (the algorithm of actions and its components, orientation, duration, functionality of an interdisciplinary team, problems of social interaction, etc.). The second is the survey of children with disabilities and parents (legal representatives) to identify needs. The third is to assess the satisfaction of the medical and social needs of children with disabilities and with disabilities and their parents (legal representatives) using comprehensive medical and social support (interviewing).

Using the method of document analysis, it was revealed that common measures for both forms of stay of rehabilitators within the framework of medical and social support according to the Order of the institution are:

1. assistance in the provision of medical care (purchase of medicines and medical devices at the expense of the recipient of social services);

2. organization of visits to medical organizations, interaction with the attending physician;

3. assistance in obtaining free dental, prosthetic and orthopedic and auditory prosthetic care;

4. assistance in carrying out or carrying out rehabilitation measures of a socio-medical nature, including in accordance with individual rehabilitation or habilitation programs for the disabled;

5. various types of physiotherapy manipulations;

6. physical therapy, individual or group;

7. performing procedures related to the preservation of the health of recipients of social services (measuring body temperature, blood pressure, monitoring medication intake, etc.), medical manipulations;

8. counseling on social and medical issues (maintaining and preserving the health of recipients of social services, conducting wellness activities, monitoring recipients of social services to identify deviations in their health status);

9. Systematic monitoring of recipients of social services in order to identify deviations in their state of health (examination, primary sanitary treatment).

Medical and social support is provided by an interdisciplinary team, including a specialist in social work, a specialized doctor, an instructor in physical therapy, and nursing staff.

A special feature of medical and social support is the possibility of round-the-clock monitoring of the child's health, prompt response to requests. The functions of a social work specialist are:

1. Social diagnostics;

2. establishment of medical and social status (basic diagnosis, functional assessment, social opportunities and social needs);

3. drawing up an individual program of medical and social support and its implementation;

4. organization of interaction with other institutions, if necessary;

5. monitoring compliance with medical recommendations;

6. Interim and final assessment of the effectiveness of the activities carried out.

All of the above is based on the active interaction of a social work specialist with relatives (legal representatives) of rehabilitators as agents of the child's socialization. A social work specialist conducts consultations and conversations, if necessary, organizes interaction with other specialists (teachers, psychologists, speech therapists, representatives of social protection, etc.).

The criteria for the effectiveness of the work carried out are the dynamics of social engagement, motivational, mental, physical potential, child health indicators and the degree of satisfaction of the medical and social needs of the rehabilitators themselves and their relatives.

At the second stage, a questionnaire was conducted aimed at identifying the medical and social needs of children with disabilities and with disabilities. The total number of participants in the survey is 77 people (N=16 children (over 14 years old) and 61 adults).

Full compliance with the norms of the legislation of the Russian Federation regarding the receipt of preschool and school education by children with disabilities and persons with disabilities has been revealed. Moreover, there is a specific interinstitutional interaction at all stages of interaction.

It should be noted that the most common diagnoses that are treated in rehabilitation centers, and this center specifically, are: complex disabilities, autism spectrum disorders, visual impairment, cerebral palsy, delayed speech development, hearing disorders. Each imposes a number of restrictions on the process of socialization of the child. A.V. Reshetnikov noted that the pre-adult period is a particularly sensitive period of socialization, when the appearance of new agents increases every year the child grows up ^{[2, p.330]}. Therefore, specialists working with children with disabilities and with disabilities, who are also agents of socialization, are called upon to work on three fronts: with children, parents (legal representatives) and the public in promoting a healthy attitude towards this category of children.

Due to these violations, the child experiences difficulties in speaking, in reactions to external stimuli, social adaptation and integration.

The sociological analysis explicated the needs that arise in children with disabilities and with disabilities, which must be met not through a ready-made solution, but by teaching the child himself to accept and work with them until an optimal level of compensation is achieved:

1.Clear and understandable pronunciation of words and sentences;

2. independent implementation of personal hygiene;

3. independent implementation of the process of dressing, removing clothes, shoes (these processes require active memory and motor skills);

4. the ability to find contact with peers, communication;

5. performing creative tasks, gameplay;

6. control of behavior (awareness of what behavior is acceptable within the framework of the team in which it is located).

The study of documentation (the presence of the disease, functional status, neurological status, psychological and speech therapy status) allowed us to develop a guide design for in-depth interviews with relatives of children with disabilities and disabilities for satisfaction with medical and social support. During the interviewing of parents of children with disabilities and with disabilities, the actual form of stay turned out to be semi-stationary, taking into account the employment of parents (legal representatives) at work. A common form of employment for mothers is remote work. The greatest positive qualitative changes were achieved when a social work specialist included a conversation with a child psychologist with the participation of parents in the program of medical and social support.

Thus, based on theoretical and empirical research, it can be concluded that the most relevant in meeting the needs of children with disabilities and with disabilities are the socio-pedagogical and socio-psychological components of a complex of measures for holistic medical and social support. Medical, social and household components are fading into the background. As for spiritual needs as components, it is not noted in any case, taking into account the stay of rehabilitators in hospital and semi-hospital conditions. It is important to note that during the work of representatives of the education system, as well as psychologists, the moment of development of personal (individual) interest in the object of one's need was missed. In other words, specialists are implementing a program to support children in accordance with legislative norms, and there was no development of interest not only in the above-mentioned urgent and peripheral needs for learning more and greater involvement. The child becomes a non-aggressive consumer of the product offered. The development of interest in active sports is leveled, despite the fact that the effectiveness of programs implemented, for example, by non-profit organizations, for the development of sports among people with disabilities, in particular, children with disabilities and with disabilities has been proven ^{[3, pp. 32-34]}.

In general, the parents (legal representatives) and the rehabilitators themselves are satisfied with the resource intensity of this institution: the quality of the equipment, the timing and schedule of services, as well as the quality of the wellness and therapeutic and preventive measures.

Conclusion. The study revealed that there is a connection between the subjects of law enforcement for working with children with disabilities and with HIA on the basis of specialized rehabilitation institutions of stationary and semi-stationary type, but it is not always consistent.

Medical and social support for children with disabilities and with disabilities was considered from the perspective of available resources and tools in healthcare as a social institution. The main criterion for evaluating effectiveness was the criterion of satisfaction of the needs of rehabilitators and their family members (parents or legal representatives). The functionality of the specialists of the interdisciplinary team, the possibility of implementing the action plan prescribed by legislative norms for the rehabilitation of children with disabilities and with disabilities, and the organization of interdepartmental interaction were considered.

The most relevant in meeting the needs of children with disabilities and with disabilities are the socio-pedagogical and socio-psychological components of comprehensive medical and social support.

Satisfaction with the quality of the ongoing wellness and therapeutic and preventive measures, combined with the positive dynamics of children's mental health indicators, indicates a high level of effectiveness of the implemented program of medical and social support.

The use of medical and social support technology as a system in hospital and semi-stationary conditions, on the one hand, has stable invariance properties, on the other, has variability.

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