Tracing the refinement of policy tools for disability rights: a content analysis of how the granting process of state-funded personal assistance in Sweden is aligned with the LSS Act.

PURPOSE: According to the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (The LSS Act), personal assistance (PA) aims to enhance good living conditions for people with disability. The Act is operationalised by a policy tool, an instruction developed and refined by the Swedish Social Insurance Agency (SSIA) to grant PA. The study explores how this instruction is aligned with the LSS rationale and goals. MATERIAL AND METHOD: Qualitative content analysis was applied on the material i.e., a government bill preceding the LSS Act and the policy tool, i.e., the SSIA instruction, versions 1994 and 2019. RESULTS: The result shows that the instruction has deviated from the LSS Act over time, by decreasing users' access to community life, a shift towards health care activities, lack of support for the PA user, increased control and service-granting criteria. CONCLUSION: This paper emphasises that the selection of policy tools goes beyond mere pragmatism, as they are subject to refinement procedures that have significant impacts over time. The deviations observed in fulfilling the objectives of the LSS Act highlights the importance of ongoing adjustments to policy tools to align with the original policy goals in order to promote disability rights.

The study explored how policy tools, which serve as compulsory guidance by outlining the personal assistance granting process for local caseworkers, align with the rationale and policy goals of the Swedish Disability Act and policy goals, aiming to enhance good living conditions for people with disabilities.The designs of policy tools are frequently revised and adjusted and consequently influence policy outcome over time.Since policy tools are important for the implementation of government policy they need to be reviewed and monitored in order to secure original policy goals with the ultimate aim of enhancing good living conditions and advancing disability rights.

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

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 = 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.Implications for RehabilitationPersonal 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.

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

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.