Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

Abstract

Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concerning Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote participation in society according to Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD). Methods: Register data and data from two questionnaires were used (N ¼ 2565). Descriptive statistics and chi-square (McNemar's test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015. Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older people, and for a particular person category. Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclusion due to fewer activities representing an active life. An increase on average of 16 h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD. ä IMPLICATIONS FOR REHABILITATION Personal assistance (PA) in Sweden is a supportive measure for persons with disabilities; however, there are few studies to show whether PA activities are fulfilling disability rights of participation in society. The results show that PA activities are used more for medical care and home-based services over the five-year period. The study highlights the importance of monitoring aspects of content to ensure that the activities of PA comply with the policy objectives of the LSS legislation and Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD), i.e., full participation in society. Monitoring efforts should include individualised planning and follow-up, moreover, ensure compliance with social service capacity at PA providers.

Cień, który pozwala wyjść z cienia – asystencja osobista dla osób z niepełnosprawnościami w Polsce i Norwegii

“…Cięcie kosztów i mniejsza dostępność do usług nie są jednak jedynymi problemami w Szwecji, uznanej za lidera we wdrażaniu asystencji. W tym kraju działania promujące uczestnictwo w społeczeństwie i asystencję osobistą (PA) reguluje ustawa dotycząca wsparcia i usług dla niektórych osób niepełnosprawnych z 1993 r. (Lag om stöd och service till vissa funktionshindrade) (von Granitz, Sonnander, Reine, Winblad 2021). Szwedzkie badania wskazują na niepełne i nierówne wdrażanie PA w kraju, co zagraża praworządności i ogranicza uczestnictwo osób z niepełnosprawnościami w społeczeństwie 2 .…”

Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review

“…However, within the European reality, von Granitz et al [17] stated that personal assistance is incorporated into Swedish law about support and service for people with functional deficiencies (LSS), which to a certain extent is an expression of social commitment from national public policy. Despite this, the authors indicate that personal assistance has incorporated more health and care activities instead of providing activities for citizen participation.…”

From traditional counselling to health‐promoting conversations? Registered nurses' experiences of providing health counselling to people living with severe mental ill‐health in supported housing

“…Co‐morbidity and substance abuse are common (Mazoruk et al, 2020), as are impaired initiative and motivation (Farholm & Sørensen, 2016). Some in this group are lonely and have difficulty managing their daily lives, including personal hygiene, housing, finances and maintaining contact with the community (Piat et al, 2018; von Granitz et al, 2021). People with SMIH are often vulnerable and in need of safety, structure and support in healthy eating, physical activity and sleep hygiene (Briguglio et al, 2020; Gustafsson, 2021).…”