Do personal assistance activities promote participation for persons with disabilities in Sweden?

Abstract

Purpose: To examine how the right to participation according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) is promoted by personal assistance use in Sweden across age, gender and eligible person categories.

Method: Register data and data from a questionnaire were used (N = 15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (χ² test) were used across age, gender and eligible person categories and components.

Results: An uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation was found. Significant differences in personal assistance reported were found between children and adults, men and women and between the three eligible person categories.

Conclusions: The discrepancy between reported and expected outcome of personal assistance indicates that Article 19 of the UNCRPD has not been met. The unequal access to participation across age, gender and eligible person categories would seem to further signify that the Act concerning Support and Service for Persons with Certain Functional Impairments is promoting activities of a caring nature rather than fulfilling Article 19 of the UNCRPD, i.e. ensuring full participation in society.

IMPLICATIONS FOR REHABILITATION

• Government assistance allowance were granted for predominantly health and care, i.e. basic needs presenting risk of undermining the intention of participation in society.

• Men reported more personal assistance use for activities promoting participation than women.

• The discrepancy found between reported and expected outcome of personal assistance underlines the importance of service providers and administrative officials being sensitive to policy intentions.

• There is a need of guidelines for service providers and administrative officials to promote disability rights of participation for persons eligible for personal assistance.

Keywords:

• Disability rights
• independent living
• social insurance
• social policy
• UNCRPD

Note

Acknowledgements

The authors wish to express gratitude to the persons who completed the questionnaire. We would also like to thank Professor Edward Palmer for generous comments on the first draft.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Notes

1 Policy intentions in the LSS Act are developed in the sections of Operational Objectives and Overall Direction, and in the Right to Action, outlined in Chapter 2, paragraphs 5–8 (Ministry of Health and Social Affairs, 1993) and are aimed at promoting equal opportunities in life and full participation in society with the purpose of providing conditions to allow the individual to live like others on equal terms.