The purpose of this master's thesis is to analyse the needs and the existing support to children with disabilities and to their community-based families. The theoretical introduction defines who children with intellectual disabilities are, what kinds of social exclusion they encounter, describes the international legal framework and the meaning of family environment for a child’s development. Furthermore, we outline the support system for children with disabilities in the Republic of Slovenia, legislative framework, network of public offices and services, deinstitutionalization and needs. The empirical part of the thesis showcases two research questions on the topic of the needs of children with disabilities and their community-based families, as well as the support they are receiving. We have implemented a qualitative empirical study with 12 interviewees. The results of this research have shown that most children with heavy or a heavier form of intellectual disability need help with everyday chores, and that in a family community, this help is mostly provided by their mothers. The children are frequently stigmatized while implementing everyday chores, such as going shopping or riding a bus, and in addition, their free time can be therapeuticised. The social networks of the children and their family mostly consist of family members and other children with disabilities attending the same kindergarten, school or association activities. Since the care for the child is dominantly taken up by the mother, mothers as informal caregivers are overburdened and lonely within the system. Frequent obstacles faced by families with children with disabilities, are lack of information and the experts’ disrespectful attitude. Although Slovenian legislation enables diverse forms of support to the families (moral, financial, expert …), they are unable to put certain rights into effect. The users encounter problems regarding the bureaucratization of procedures, long waiting lines, outdated procedures, and they fail to obtain the necessary information and directions within the network of public offices and services. The parents’ support is not adapted to the child and family but instead standardized. The actual support received is above all financial, however, it does not cover all living expenses connected to childcare. Strong support to the parents is offered by the community of parents of children with disabilities and the associations dedicated to support children with disabilities. In the conclusion, we discuss the results of the study and suggest further possible steps for improvement in this field.
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