Socialinių paslaugų šeimai, auginančiai vaiką, turintį negalią, struktūra Lietuvoje ir Latvijoje /

Relevance. Every family, which plans to have a baby or is already expecting one, hopes that the baby will be healthy, his/her development will be normal and he/she will not grow up to be somehow different from the others. However, it happens that sometimes the baby is born with a disability, the nature of which may be various. In accordance with the Law on Social Services of the Republic of Lithuania (2018, Clause 14 of Article 2), a child under 18 years of age who has partially or completely failed to acquire the independence corresponding to his age and whose possibilities of education and participation in society are limited shall be considered to be a child with disability. On the basis of statistical data, the number of children with disabilities was examined in the Global Burden of Disease Report, which indicated that there are 95 million children (5.1 percent) with disability, 13 million (0.7 percent) of which have a severe disability (Disability and Working Capacity Assessment Office under the Ministry of Social Security and Labour of the Republic of Lithuania, 2014). Meanwhile, according to the data of the Ministry of Social Security and Labour of the Republic of Lithuania (2018), in 2013 the number of children with disabilities in Lithuania was about 15 thousand, in 2015 – about 14.7 thousand and at the end of 2017 – about 14.8 thousand. The mentioned statistics showed that the number of children with disabilities in Lithuania slightly decreased during the period of 2013 – 2015 and remained quite stable during the period of 2015 – 2017. It suggests that during the period from 2013 to 2017 the situation has slightly improved, but despite this fact the mentioned social group needs social assistance and high-quality social services. People with disabilities have always had difficulties with their situation in the society (Ruškus, 2014). Therefore, it is often emphasized that when the child with a disability is born the life of the family dramatically changes in a number of ways. In 2012, a research was carried out and its aim was to find out more about the psychosocial situation of families raising children with disabilities. The results showed that according to almost a half of the surveyed families (43.6 percent) the relationship between them did not change, while in some cases it even became stronger (14.7 percent) (Raudeliūnaitė and Rympo, 2012). However, according to the researchers, the disability of a child always changes the usual model of the family life (Butkevičienė, 2000) and the majority of children with disabilities and their families suffer from multiple discrimination (Russell, 2003, quote from Read, Clements and others, 2006), which has an impact on the quality of life of a child with a disability and his/her family. What is more, the discrimination may cause serious psychological problems to the parents and other members of the family, who later may start avoiding the child with a disability and this can have a negative effect on family relations. It is assumed that families raising children with disabilities do not receive the necessary assistance in the community (Order “Regarding the Approval of the 2014 – 2020 Action Plan on Transition from Institutional Care to the Family and the Community Based Services for People with Disabilities and Children without Parental Care ”, 2014). Nevertheless, it shall be noted that the effectiveness of the non-governmental organizations (hereinafter – NGO) is increasing, while the overview of the situation in Lithuania and Latvia revealed that 32 476 NGOs were operating in Lithuania in 2009, including the communities (Beneševičiūtė, 2013), while 20 662 public organizations, associations and foundations were operating in Latvia in 2016 (Caune, Neilande and others, 2016). This suggests that the non-governmental sector of Lithuania is wider than in Latvia and it is very important that not only the governmental sector (municipalities), but also the non-governmental sector (communities) is involved in the process of providing social assistance as only the high-quality social assistance and social services as well as their accessibility and the variety of providers of social services/assistance allows to seek for the improvement of the quality of life of families raising children with disabilities. Despite the fact that people experience the lack of community-based assistance, the progress in creating coordinated services for children with disabilities has been made over time. 30 years ago, early intervention programmes were basically not carried out, but according to the researchers today social services are accessible to everyone in order to improve a child’s development and other aspects of his/her life (Shonkoff and Meisels, 2000). It means that 30 years ago the scheme of necessary assistance was created only for children with disabilities, while now the aim is to create a wider social system the main objective of which would be to provide social assistance not only to the child with a disability, but also to his/her family. Therefore, it can be stated that the non-governmental sector (communities) is an integral part of the process of providing social assistance, while the issue regarding the services which families raising children with disabilities receive in governmental and non-governmental services remains highly relevant. Problematic issues of the research. What social services do families raising children with disabilities receive in Lithuania and Latvia? How do the families living in Lithuania and Latvia evaluate the social services received? Subject of the research – the structure of social services necessary for a family raising a child with a disability. The aim of the research – to reveal the structure of social services necessary for a family raising a child with a disability in Lithuania and Latvia. Objectives: 1. To describe the situation of a family raising a child with a disability and the structure of the social services necessary in order to ensure the quality of life while applying the method of theoretical analysis. 2. To reveal the structure of social services which are important to the quality of life of the family raising the child with a disability in Lithuania and Latvia while applying the qualitative research methods. 3. To identify, while applying the analysis of the qualitative research results, what services does the structure of social services lack according to the evaluation of families raising children with disabilities in Lithuania and Latvia. Methods: theoretical analysis, semi-structured interview, written survey, providing open-ended questions, qualitative content analysis. Participants of the research – five families raising children with disabilities in Lithuania and six families raising children with disabilities in Latvia. The scope of the qualitative research was chosen while applying the non-probability selection method and its principles: random selection of groups and target group formation (Kardelis, 2002). Criteria for selecting the participants of the research: there should at least one child with a disability in a family; a family raising a child with a disability must receive social assistance (social services). CONCLUSIONS 1. The analysis of scientific literature revealed that the birth of a child with a disability makes a significant change in the lives of all members of the family. The family raising a child with a disability faces many different challenges (problems related to the child with a disability are still quite difficult to solve and potentially have a serious impact on the health and psychological state of the parents), while the quality of life of other members of the family and the satisfaction of the existing needs depend on the nature of the child’s disability. In order to ensure the proper quality of life of the family raising the child with a disability the main laws and other legislation of Lithuania and Latvia regulating the provision of social assistance shall be followed. In accordance with laws and legislation of the Republic of Lithuania, the following assistance shall be provided: general social services (informing, consulting and others.) as well as special social services which are divided into social supervision (developing and maintaining social skills and others) and social care (day social care and others). The similar structure of services can be found in the legislation of the Republic of Latvia regulating the social services. Following the mentioned laws and other legislation, it was intended to determine the need for social services depending on the type of child’s disability and other factors. Therefore, it can be assumed that with the help of laws the attempts to ensure the proper process of providing social assistance to families raising children with disabilities and other socially vulnerable groups in Lithuania and Latvia are made and it is intended to improve the quality of life of such families. 2. After the analysis of the qualitative research results it was determined that families raising children with disabilities receive not only social, but also medical rehabilitation services as well as special educational support, but the mentioned services are minimally emphasized. The participants of the research mainly emphasized the social services which are important to the quality of life and are provided by the municipalities: informing, consulting, financial assistance as well as material, employment organization, informing and other assistance received from the communities. The opinion of the families participating in the research differed in respect of the financial assistance (as a social service). Some participants of the research both from Lithuania and from Latvia stated that they received financial assistance, but they would like it to be higher, while the remaining part of the participants stated that this service is unnecessary due to their good material status. It shall be noted that participants from Latvia mentioned the services of an assistant, the provision of which is not yet legally regulated in the main documents regulating the social services and their provision in Lithuania. Therefore, it can be assumed that the Latvian system of social services is more advanced than the Lithuanian system of social services in respect of the provision of the services of an assistant. Nevertheless, the participants of the research are satisfied with the social services and other services provided by the communities and municipalities both in Lithuania and in Latvia. 3. The analysis of the qualitative research results also revealed that some participants, both from Lithuania and from Latvia, feel the lack of social services (organization of employment, financial assistance, mediation and representation); the participants living in Lithuania also feel the lack of the services of respite care. It may be presumed that the structure of social services shall be complemented with new services and their provision and accessibility for families raising children with disabilities shall be ensured without any delays depending on the needs of the child with a disability.

Grantor dc:publisher

Institutional Repository of Vilnius University

Year dc:date

2018

Author dc:creator

• Kiaraitė, Ramutė,

Contributors dc:contributor

• Rūdytė, Kristina

• Social services ; family ; disabled child

Statement dc:rights

• info:eu-repo/semantics/openAccess

Language dc:language

lit

Repository record dc:identifier

https://repository.vu.lt/VU:ELABAETD28547836&prefLang=en_US

OAI identifier oai:identifier

oai:vu.lt:elaba:28547836