| Summary: | Despite the avowed aims of Icelandic welfare policies to provide services in a family-centred manner, parents commonly express their experiences of fragmented services that are offered more on the terms of the service providers than the families. Theories on family-centred approaches call for services to be planned around the whole family, not just an individual child or person, and the family unit is recognised as the service user. Accordingly, the service providers and the family are urged to collaborate when making informed decisions about the support and services needed. The overall aim of this study has been to gain a better understanding of the discrepancies reported in the literature between the welfare policy on providing comprehensive and flexible services and the lived experiences of families raising disabled children. In particular, the dissertation endeavours to capture the views and wishes of families with disabled children while examining the roles, attitudes, and working environments of the professionals who provide services to disabled children and their families. The study was conducted within the field of disability studies and combines a number of intersecting theoretical approaches. The first is a socio-relational and human rights understanding of disability developed by disability and legal scholars over the past decades, which is at the core of the UN Convention on the Rights of Persons with Disabilities (CRPD). The study is also grounded in social childhood studies emphasising children’s rights and the UN Convention on the Rights of the Child (CRC), the first binding international law to comprehensively address the human rights of children, including disabled children. Other central theoretical foundations of the study are family-centred theories, which emphasise collaboration and partnership between the service providers and the family on goals and implementation of services. Finally, the study is informed by the third generation of cultural-historical activity theory (CHAT) and ...
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