Respite care as a social service for families with children with severe and multiple disabilities

Sirotina Tatiana Victorovna ORCID: 0000-0002-8569-9310 PhD in Sociology Associate Professor, Department of Social and Youth Policy, Altai State University 656099, Russia, Altaiskii krai, g. Barnaul, ul. Dimitrova, 66, of. 505 tatjanasirotina@gmail.com Other publications by this author     Chukanova Tatiana Viktorovna PhD in Sociology Associate Professor, Department of Social and Youth Policy, Altai State University 656099, Russia, Altaiskii Krai oblast', g. Barnaul, ul. Dimitrova, 66, of. 505 chukanova.64@mail.ru Antonovich Irina Vladimirovna ORCID: 0000-0002-3353-8523 PhD in Sociology Associate Professor, Department of Social and Youth Policy, Altai State University 656099, Russia, Altaiskii Krai oblast', g. Barnaul, ul. Dimitrova, 66, of. 505 irina.antonovich2504@yandex.ru Kalinina Yuliya Aleksandrovna ORCID: 0000-0001-9256-6543 PhD in Sociology Associate Professor, Department of Social and Youth Policy, Altai State University 656099, Russia, Altaiskii oblast', g. Barnaul, ul. Dimitrova, 66, of. 505 jul.kalinina@gmail.com Other publications by this author

Mazailova Tatiana Aleksandrovna PhD in Sociology Associate Professor, Department of Social and Youth Policy, Altai State University 656099, Russia, Altaiskii Krai oblast', g. Barnaul, ul. Dimitrova, 66, of. 505 bakulinat@mail.ru

Analysis of statistical data from open sources indicates that the number of children with disabilities is growing in the Altai Territory. According to the social passport of the region, as of January 1, 2022, 11,253 disabled children lived in the region, which amounted to 2.59% of the total number of children in the region. As of January 1, 2021, 10,963 disabled children lived, which was 2.49% of the total number of children in the Altai Territory. As of January 1, 2020, 10,779 disabled children lived in the region, which amounted to 2.42% of the total number of children in the region (Social Passport of the Altai Territory on 01.01.2022, Social passport of the Altai Territory on 01.01.2021, Social passport of the Altai Territory on 01.01.2020).

The family of a child with severe and multiple developmental disabilities does not differ significantly from any other family. But the appearance of such a child is a very difficult test, in which the family needs objective information, the support of significant people, social resources and qualified assistance from specialists. The researchers note that the quantity and quality of available assistance and support resources are of particular importance for the normalization of the family life of a child with severe and multiple developmental disorders ^[1].

By severe and multiple developmental disorders we mean congenital or acquired at an early age combinations of disorders of various body functions. The occurrence of severe and multiple developmental disorders is caused by the presence of organic lesions of the central nervous system, genetic abnormalities, metabolic disorders and other factors ^[2].

Each child with severe and multiple developmental disorders is unique, including due to the different number, nature, severity of primary and subsequent developmental disorders, the specifics of their combination. Most often, children with severe and multiple developmental disorders have the following problems. Intellectual disabilities are characteristic of most of these children, and motor disorders are also common. Visual or hearing impairments are often observed, and sometimes a combination of them. Many children are diagnosed with epilepsy, autism spectrum disorders and emotional-volitional disorders may be present.

Domestic and foreign researchers (T.A. Basilova, A.L. Bitova, O.S. Boyarshinova, M. Brambing, R.B. Darling, J.D. McLennan, I.V. Moiseeva, N.I. Oteva, A.M. Paikova, J. Robertson, M. Seligman, A.Y. Khokhlova, etc.) note that the peculiarities of the functioning of families raising children with severe and multiple developmental disorders are manifested at various levels, including psychological, somatic, social, etc. Legal representatives experience a high level of stress, which leads to various somatic diseases; they often experience a sense of isolation, depression and helplessness, negative psycho-emotional state of parents is noted in families; social contacts of families are limited ^{[3; 4; 5; 6; 7; 8; 9; 10]}.

When accompanied by families raising children with severe and multiple developmental disabilities, different models are implemented: deficit, child-centered, family-centered, etc. Currently, more and more attention is being paid to the family-centered approach, where the family is considered as a rehabilitation structure with favorable conditions for the development of a child with severe and multiple developmental disorders ^[6].

The theoretical basis of the study was the ecosystem model of social work (W. Brenfenbrenner, A. Pinkus, A. Minahan, M. Seligman, B. Darling, etc.), which allows to study the interaction between the family and other social structures, to identify the conditions for the implementation of the technology of social service "Respite" in the region ^{[1; 11; 12]}. The study is also based on the provisions of V. Wolfensberger's normalization theory with its emphasis on the study of mechanisms for improving the lives of people with disabilities and their families.

"Respite" as an innovative social technology for families raising children with severe and multiple developmental disabilities is aimed at providing legal representatives with a break from performing their duties – caring for a child with a disability, and providing the child with opportunities to gain new experiences with a wide range of people. Respite can include many variations that depend on a combination of different conditions, such as:

location – it can be a child's home; the home of a person who implements a "Respite"; a special institution; some other institution;

duration – several hours, overnight stay, several days with overnight stay, longer period;

time – weekdays, weekends, evenings, nights;

who provides – local authorities, health services, non-profit organizations, whose services can be paid for both from the state budget and from personal funds ^[9].

According to research, "Respite" can positively affect not only the well-being of caregivers, but also children receiving this service and the family as a whole. ^{[8; 9; 10; 13]}. Janet Robertson and colleagues analyzed the results of more than 60 studies on the impact of the implementation of the "Respite" technology on families raising children with disabilities ^[9]. The most positive results noted in relation to the well–being of legal representatives are stress reduction; rest; a sense of relief; freedom to do something for yourself, for example, reading a book or social activity.

Studies comparing clients of "Respite" and those who did not receive it revealed a lower level of stress in the former, a feeling of greater social support and a higher moral level.

According to legal representatives, the implementation of the "Respite" technology allows for better interaction with a child with a disability; the family to cope independently; reduces family stress; allows family members without disabilities to spend time together; allows the family to do what was previously unavailable.

One of the positive effects of the "Respite" is the opportunity for the family to be ordinary, to do things that would be impossible with a child with a disability, for example, to visit those places where it is impossible to get in a wheelchair. The implementation of the "Respite" technology allows you to spend more time with other children and your spouse.

As a rule, parents consider a "respite" to be a boon for their children with disabilities, namely: it is an opportunity to master new social skills; to feel independent of their parents; to get new experience and more attention from a temporary "parent" who has more time for the child, etc. ^[9].

Domestic experience in the implementation of the "Respite" technology is represented by several organizations, including the BANO "Resource Center for Support of People with Multisensory Disorders and their Family Members "Yaseneva Polyana". Together with the Community of Deafblind Families, this organization has been implementing the innovative technology of social service "Respite" in several regions of the Russian Federation since 2016. Each family raising a child with combined hearing and vision impairment has 360 hours of "Respite" per year (for 360 days). The amount of services provided can be used in any format at the request of parents. Experts note the great demand for services within the framework of this technology, especially by families raising children with severe and multiple disabilities ^[13].

The process of implementing the "Respite" technology is divided into several stages: acquaintance with the family, the selection of a specialist, the beginning of direct work with the child. The acquaintance is attended by the child's family, specialists of the organization. The purpose of the initial entry into the family is to collect information about the condition of the child, the needs of the family, the expectations of parents from the service. Employees introduce the child's family to the legal aspects of the provision of services, answer questions. According to the results of the family visit, a protocol of the visit is drawn up, a personal file is filled in, to which the necessary documents about the family are attached.

The specialists who carry out the "Respite" are different in different organizations and are called differently. These can be social nannies, temporary "parents", social work specialists, etc. The selection of a specialist is based on the analysis of specialist questionnaires, the needs and wishes of a family raising a child with special needs. This is followed by a personal acquaintance of the family with a specialist who will carry out a "Respite".

At the next stage, a tripartite agreement is signed between the child's family, the specialist and the head of the organization. After signing the contract, the provision of services begins. Once a month, after the hours worked, an act of completed work is drawn up, after which all three parties pay for the services of a specialist.

Administrative employees of the organization monitor compliance with the terms of the contract by all parties and carry out planned and unscheduled control. Control is necessary to maintain the quality of the "Respite" technology provided at the proper level.

At the moment, in the Russian Federation, the "Respite" technology for families raising children with disabilities, including those with severe and multiple developmental disabilities, is not included in the list of social services guaranteed by the state ^{[14, 15]}. Residents of a number of regions of the Russian Federation can use the short-term child care service only in the format of placing a child under the age of 18 in social assistance and support centers for families with children for several hours. The departure of a specialist to the territory of the child's residence (in the environment familiar to him) is usually impossible. This makes the service inaccessible for children with severe and multiple developmental disabilities, the transportation of which requires considerable physical effort and the use of special equipment. In addition, working with children with severe and multiple developmental disabilities requires qualified training in the field of care, feeding, hygiene procedures, etc., which is not always available to specialists of social assistance and support centers for families with children.

In 2021, an empirical sociological study was conducted in the Altai Territory in order to analyze the possibilities and difficulties of implementing "Respite" as an innovative technology of social service for families raising children with severe and multiple developmental disabilities in the Altai Territory.

102 people took part in the study. 62.3% of respondents were specialists of social service organizations of the Altai Territory (rehabilitation centers for children with disabilities, comprehensive social service centers); 37.7% were employees of non–profit organizations and volunteers of the region.

84.2% of respondents had experience of interacting with children with severe and multiple developmental disabilities and their families. Slightly less than half of the respondents (46.5%) provided services to families with children with severe and multiple developmental disabilities at home.

According to respondents, they have knowledge and skills in the following areas that are important for the implementation of the "Respite" technology: play activities with a child with severe and multiple developmental disabilities (72% of respondents), caring for such a child (68% of respondents), walking with a child (36% of respondents), feeding a child with severe and multiple developmental disorders – only 16% of respondents.

Respondents also identified groups of children according to the existing violations, interaction with which causes the greatest difficulties in work. These are mainly children with mental and intellectual disabilities (40%), children with autism spectrum disorders (40%), 36% of respondents experience difficulties in working with children with severe hearing impairments and 34% – with children with severe visual impairments. 28% of respondents noted difficulties in working with children with severe motor disorders. The results obtained indicate the need for additional training of specialists to work with these children. At the same time, 14% of respondents do not experience difficulties in working with any of these categories of children.

When answering the question "What difficulties do you have (may arise) when working with legal representatives of children with severe and multiple developmental disabilities when implementing the "Respite" technology?" respondents identified the following difficulties: fear of not meeting the expectations of parents ("Fear of not reaching mutual understanding with them or not meeting expectations"), different views on the goals and methods of working with the child, distrust on the part of parents, the presence of overprotection of the child. "Sometimes it's hard to find words, you don't know what can offend"; "The difference in expectations from work for me and my parent."

As the main difficulties that may arise when implementing technology at home for children with severe and multiple developmental disabilities, respondents noted: lack of contact with the child; lack of feedback; insufficient methodological recommendations and manuals for working with children with such developmental disabilities; fear of harming the child. The respondents also noted a lack of experience working with such children and providing services in the form of home care.

Respondents also expressed their opinion about who should implement the "Respite" technology for families raising children with severe and multiple developmental disabilities.

The majority of respondents indicated Rehabilitation centers for children and adolescents with disabilities (75%), and a considerable part of respondents noted Comprehensive Social Service Centers (65.9%) as the main providers of these services.

Non-profit organizations (29.5%) and volunteers (22.7%) were also identified as those who could implement the "Respite" technology. 4.6% chose the answer option "by all organizations represented", as they believe that this social technology should be mobile and can be provided on the basis of different organizations.

According to respondents, the "Respite" technology should include mainly social and pedagogical services. Thus, 88.6% of respondents chose play activities with a child among other activities. Also, the child care itself occupies a leading position, 65.9% of respondents chose it.

About half of the respondents chose such activities as: walking; self-service skills training. Less than half of the respondents chose "feeding", "taking medications". This is probably due to the fact that these types of activities require additional knowledge and skills from specialists in working with children with severe and multiple developmental disabilities.

Respondents identified the following types of support that they need when implementing the "Respite" technology, namely: consultations of specialists and colleagues (87.9%); regular professional development (72.7%); methodological assistance (60.6%); regular supervision (54.5%). Less than half of the respondents consider it important to pay extra for the implementation of technology, volunteer assistance, legal support regarding the drafting of a contract with a family, and organizational support.

The overwhelming majority of respondents believe that providing a "respite" to families with children with severe and multiple developmental disabilities should be paid for with funds from the state budget (97.7%). Half of the respondents (51.2%) noted grant support for the implementation of the technology, and only 22% believe that payment is not required, since the technology is implemented by volunteers or NGOs. At the same time, I would like to note that none of the study participants chose the answer "the implementation of the technology should be paid for by families raising children with severe and multiple developmental disabilities".

Respondents noted the following knowledge and skills that are not enough for them at the moment to implement the technology: 38.8% of respondents do not have sufficient skills to provide pre-medical emergency medical care, which is very important when working with such children; 36.7% of respondents noted a lack of skills in moving and positioning, including the verticalization of children; 34.7% the respondents do not have sufficient skills to interact with children with sensory impairments (hearing and visual impairments).

The same percentage of respondents (30.6%) do not have sufficient knowledge in the field of interaction with children with autism spectrum disorders and with children with severe and multiple developmental disorders. A third of the respondents do not know how to carry out hygienic procedures. About a quarter of respondents (26.5%) need additional knowledge in the field of feeding, interaction with children with intellectual disabilities (24.5%) and the same number in the field of developmental child care.

Some experts noted that, first of all, it is necessary to understand the needs and desires of the family itself: "It seems to me that it is important not so much to know how to organize leisure time for a child, as to find a point of interaction – so that it is comfortable to be around. You can just sit by the hand in silence, the effect will still be."

The majority of respondents (3/4) would like to take advanced training courses to provide a "Respite" service to families with children with severe and multiple developmental disabilities.

Thus, thanks to the conducted sociological research, it was possible to identify the main difficulties that arise and/or may arise when implementing the "Respite" technology to families raising children with severe and multiple developmental disabilities. Specialists are afraid of not meeting the expectations of parents and getting their inadequate reaction to their actions towards the child. Misunderstanding, distrust and excessive control on the part of the children's legal representatives are also possible. At the same time, parents and specialists may pursue different goals when providing services, have different ideas about technology and its content.

In many ways, these difficulties are solved by concluding a tripartite agreement between the legal representative of a child with severe and multiple developmental disabilities, a specialist and an intermediary (coordinator, social service organization, non-profit organization).

The most pronounced barriers for specialists in working with children with severe and multiple developmental disabilities are: difficulties in finding contact with such children, lack of knowledge, skills and experience working with children with severe and multiple developmental disabilities, fear of making mistakes and harming the child with their actions.

The possibilities of implementing the "Respite" technology in the region based on the results of the study should include the willingness of many specialists to provide these services, undergo training, awareness of the importance of implementing the technology, existing knowledge and skills of working with children with severe and multiple developmental disabilities among the interviewed specialists. The inclusion of the "Respite" technology in the state list of social services would allow this technology to develop more systematically, ensuring that these services are received by families raising children with severe and multiple developmental disabilities.

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