Abstract

OLIVEIRA, Pedro Nuno de. Personal Assistance and Disfamiliarism: a Practical Test of the Portuguese Independent Living Support Model. SOCIOLOGIA ON LINE [online]. 2023, n.32, pp.61-90.  Epub Dec 07, 2023. ISSN 1647-3337.  https://doi.org/10.30553/sociologiaonline.2023.32.3.

Familiarism is one of several cross-cutting traditions in the history of disability, even preceding the institutionalization process. The literature on the Independent Living paradigm highlights the crucial role of personal assistance in the lives of individuals with high levels of dependency, in order to create more opportunities for activation through less dependence on informal care. However, available data reflect inadequacy and dissatisfaction with disability services in the European Union (EU), even in countries that have formally established institutions promoting the Independent Living paradigm. Therefore, based on a comparative analysis of Spain, Italy, the Republic of Ireland, and Portugal, this article aims to empirically address the research question: Does the level of generosity in the Portuguese Independent Living Support Model (MAVI) guarantee defamiliarization and eliminate dependence on informal care? The results reveal a strong dependency between individuals with disabilities and their caregivers/families, even in more generous social assistance programs. While acknowledging that personal assistance can enhance social inclusion for both caregivers and the assisted individuals, we believe that an Independent Living Support Model (MAVI) should not solely rely on shifting familial care to personal assistance. The true emancipatory potential of a MAVI should be holistic, promoting the autonomy and decision-making power of the dependent person. The success of this defamiliarization process depends on establishing a secure environment for all parties involved, recognizing and valuing the knowledge and experience of the dependent individual and informal caregiver, and creating a micro support network associated with meaningful experiences and values.

Keywords : neoinstitutionalism; independent living; familiarism; personal assistance..

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