Independent living and autism: Evaluation of the results and impacts of the Portuguese personal assistance support model
Event Title
II Intercongresual del Comité de Investigación Sociología de la Discapacidad
Year (definitive publication)
2025
Language
Spanish/Castilian
Country
Spain
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Abstract
In Europe most people with autism are institutionalized when school ends (Nogueira et al., 2014; Autism Europe, 2024). In Por-tugaland in Europe, most institutions continue working according to the medical model of disability (Autism Europe, 2019; Nogueira, 2019). In 2019, the Portuguese Government create the "Support Model for Independent Living, and we have 2 specific centers for Independent Living for autistic people and autistic people in practi-cally all generalist centers. The Portuguese model of Independent Living support is unique and different from the most common mo-dels in Europe.
The University Institute of Lisbon (ISCTE) carried out a large na-tional study on the universe of recipients of personal assistance in Portugal. I was one of the coordinators of all the work (Capucha et al., 2021). Quantitative and qualitative methodology was applied. Surveys were carried out to: i) recipients of personal assistance; ii) family members; iii) personal assistants; iv) technicians from inde-pendent living support centers. Additionally, five case studies were carried out, in five different geographical areas, in which interviews and focus groups were conducted, including a wide range of stakeholders.
We will show data about: i) characterization of support recipients; ii) type of support provided and number of hours of support per day; iii) changes in their lives after the beginning of the personal assistance support; iv) satisfaction of recipients and their families; v) future expectations; vi) contribution of personal assistance to the prevention of institutionalization and deinstitutionalization. The results show a very strong and positive impact of the personal assis-tance in autistic persons, even those with learning disabilities, with cognitive deficits and nonverbal persons, which demystifies the idea that personal assistance and independent living only works for the most functional autistic persons. The results also show a strong im-pact on the quality of life of families.
Acknowledgements
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Keywords
autism,independent living,self-determination,personal assistance
Português