Exploring independent living initiatives for people with intellectual disabilities: insights from the Spanish case

Abstract

In the past four decades, Independent Living (IL) has gained prominence in inspiring services for people with intellectual disabilities. Yet, its practical application faces challenges within a field still influenced by medical-rehabilitative and paternalistic perspectives. This study seeks to explore the fundamental characteristics that IL models assume within the field of intellectual disabilities, focusing on the Spanish experience, identifying pioneering projects, influential models, and their ripple effects. A comprehensive mapping of IL projects has been conducted, analyzing publicly available information on 86 identified cases. In seven significant cases, in-depth interviews were conducted with people responsible for their development. Our analysis sheds light on some emerging tensions, with a focus on what is identified as a family-centered approach, an emphasis on skills-oriented services, and an overreliance on housing accessibility. Finally, this paper offers recommendations to enhance these initiatives and foster the integration of IL in the intellectual disability context.

Points of interest

• This study examines difficulties encountered when implementing independent living services for people with intellectual disabilities in Spain.

• The study shows that independent living for people with intellectual disabilities has the following characteristics: it is mostly oriented towards the families, it is focused on the development of personal skills, and it is strongly dependent on the possibility of housing access.

• We suggest the need to find ways to place people with intellectual disabilities at the center, while considering their social networks. It is also important to promote personal assistance, allowing support in tasks lead by the people themselves. And it is a fundamental responsibility of the administrations to ensure that everyone has access to housing.

• Independent living for individuals with intellectual disabilities should no longer be seen as something exceptional, but rather as the center of services provided in this field.

Keywords:

• Intellectual disability
• independent living
• housing
• transition
• autonomy

Acknowledgements

Thanks to the CareNet research group (UOC) colleagues for the shared commitment and insightful reflections.

Disclosure statement

There are no competing interests to declare.

Ethics approval statement

This work meets with the approval of the Ethics Committee of the Universitat Autònoma de Barcelona.

Data availability statement

All data supporting the findings are available from the corresponding author upon request.

Additional information

Funding

This work was supported by the Agència per a la Qualitat del Sistema Universitari de Catalunya under Grant FI_B 01109.