Disability Policy in Paractice: Perception of received support and child participation

Sammanfattning: Since the 1980’s institutions for children with disabilities in Sweden no longer exist. As other children, children with disabilities have the right to live with their family at home. Caring for and parenting a child with a disability, however, can be more demanding than caring for and parenting a child without disability. Due to the extra demands, parents of children with disabilities, therefore, need to be supported. In Swe-den, there are laws, regulation, and policies, such as the Act concerning Support and Services for persons with certain impairments, which regulate support for children with disabilities and their parents. The overall aim of the present thesis is to investigate how interna-tional (UN conventions) and Swedish laws, regulations, and policies are manifested in everyday experiences of parents of children with disabilities. The present thesis discusses three different ways to under-stand disability referred to as: the medical, the social and relational model. These models are considered useful as they show how different perspectives of disability affect the way we view the needs of children with disabilities and their parents in practice. Bronfenbrenner’s ecolog-ical systems theory is also used as a framework in the thesis. This theo-ry gives an overall picture of how the relationships between children with disabilities, their parents, and professionals are affected by the laws, regulations, and policies for support for children with disabilities and their parents. Furthermore, the concept of social capital is used to get a deeper understanding of the importance and function of support in everyday life. The aim of Study I was to explore parents’ experience of the re-ceived support. In Study I, semi-structured interviews were conducted with six parents of children with intellectual disabilities (five mothers and one father), in the Western region of Sweden. Thematic analysis was used to capture parents’ experience and perceptions. Three catego-ries were identified in all interviews: 1) Information of diagnosis and services, 2) accessibility of support and services, and 3) quality of sup-port and services. The aim of Study II was to investigate professionals’ and parents’: 1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making, and evaluation of support, and 2) satisfaction with current level of such participation. In Study II, 144 parents of children with disabilities went through a structured interview conducted by telephone. Additionally, 228 professionals, who worked in organization providing support services for children with disabilities and their parents, completed a web-based questionnaire. Most professionals indicated they were able to meet with children directly, but relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct commu-nication with the child. Both parents and professionals rated children’s opportunities to participate as limited, but the participation increased with the child’s age. The results from the two studies show how the international and Swedish national disability policy is manifested in and affect the par-ents' experiences of having a child with disabilities. The existing laws, regulations, and policies governing the right to support can affect the interaction between parents and professionals and parents everyday life. They can also enhance or restrict the parents and even the chil-dren's social capital.