THE PARADOX OF ASSISTED SELF-DETERMINATION AND PARTICIPATION: A literature review on professionals facilitating the self-determination and participation of people with intellectual disabilities in group homes

Abstract

The 19th article of the United Nations Convention on the Rights of Persons with Disabilities of 2008 obligates the ratifying states to realise the right of persons with disabilities to live in communities rather than in institutions. Based on this article, in 2012 the Finnish government ruled the decision in principle mandating that after 2020 no person with disabilities in Finland would live institutionally but in smaller scale group homes. The transition from bigger institutions into smaller group homes provides a more intimate and natural living environment and thus more opportunities for self-determination and participation for their residents.

Assisted self-determination and participation pose a paradox. This paradox is part of the ordinary life for many people with intellectual disabilities (PWID). The aim of this thesis is to explore through narrative literature review which factors promote and which hinder the self-determination and participation of PWID in their group homes and immediate surroundings. The literature review consists of ten articles published between 2015 and 2021 that were analysed through thematic analysis method.

The two research questions set in this thesis are: Which factors enable and create space for self-determination and participation for people with intellectual disabilities in their everyday lives in their group homes and immediate surroundings? Which factors negatively affect and hinder this self-determination and participation? Through the analysis three themes were derived to answer the first research question of enabling factors: Relationship between the staff and the PWID, Attributes related to the staff, and Support from service providers and staff managers to the staff. To the second research question set of hindering factors four themes were derived: Attributes related to the staff, Attributes related to the people with intellectual disabilities, Physical and organisational restrictions, and the Lack of resources.

In the chapter “Results” these findings are presented, furthermore in the chapter “Conclusions” discussing how based on the research of this thesis, the professionals working in the group homes of PWID can most effectively and committedly work towards the actualisation of self-determination and participation of PWID.

Keywords: Intellectual disability, Self-determination, Participation, Group home