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Personal assistance (PA) is stated in Article 19 of the UNCRPD as an internationally recognised disability right and is operationalised as a measure in the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (the LSS Act). The Act’s overall policy goal is to promote good living conditions for the eligible persons by enabling participation in society on equal terms with others. The governance of PA is a divided responsibility between the municipality and the Swedish Social Insurance Agency (SSIA), which assesses and grants PA-allowance if the PA applicant exceed 20 hours of certain needs per week. The overall aim of the thesis was to explore how the governance of PA-allowance enables to fulfil the LSS Act policy goals. The main findings of the thesis demonstrate a tilt in PA towards a medical model of disability, marked by a domination and an increase of healthcare activities over time. Less activities representing participation in society were found and unequal access to PA activities across age, gender and groups of persons with disabilities. The findings imply an increased risk to social and financial exclusion of PA users. Further, the LSS Act’s rationale and policy goals were shown to have a weakened impact on the SSIA instruction, the refined policy tool which outlines the PA-allowance granting process. A development towards a medicalised application of PA-allowance was found, characterised by healthcare measures to support medical conditions and a shift towards PA users with less ability to partake in the PA-allowance granting process. Factors shown to have influenced the governance of PA-allowance include: case law, changed policy priorities, weakened PA collaboration structures, inadequate monitoring of PA outcomes, strained working conditions at the SSIA and extensive complexities of the PA-allowance application. This thesis illustrates that the SSIA regime logic has thoroughly influenced the LSS policy outcome with ti

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.

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 (N¼15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (v2 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., Avhandlingsarbete; Att styra rättigheter rättsäkert: Har socialförsäkringens implementering av personlig assistans uppfyllt LSS värdegrund för goda levnadsvillkor?

Reducing differences in wellbeing between groups of citizens is of central importance to the welfare state to achieve social justice. A national strategy was adopted by the Swedish government in 2011 that highlighted disability rights within the goal of National policy for Public Health. The monitoring of wellbeing among persons without and with disability shows that the latter group experiences much higher levels of distress. These results raise the importance of effective interventions to achieve the objectives of the strategy. One of the main welfare interventions to fulfill disability rights in Sweden is considered to be personal assistance. The reform molding personal assistance was in 1994 a ground-breaking role-model with a strong focus on the recognition of disability rights and covers a wide range of eligible groups with regard to age, impairment and diversity of needs. The hallmark of personal assistance is that the assistant helps out with activities that the user would have done her/himself, if it were not for her/his physical, mental or intellectual limitations. How the number of hours of personal assistance granted is related to the experience of wellbeing, has not previously been studied. Considering the fact that the goal of personal assistance was to achieve independence and power to act in one’s own life, the question on how hours for personal assistance correlates with wellbeing, can be seen as a strong indicator in measuring the effectiveness of the reform. The study aims to examine the relationship between hours of government assistance allowance granted to adults (>16 years) with the outcome of psychological wellbeing and distress across gender, age and eligible groups. Data from a questionnaire to persons granted assistance allowance (n=1531) and registry data was used. Statistic methods used were descriptive statistics, principal component analysis, and linear regression. Preliminary results was prsented showing bivariate models incl

Background: This study examines how groups of components, extracted from a questionnaire, represent a distribution of activities provided by personal assistance in Sweden across age, gender and eligible person categories. By comparing the outcome of personal assistance to the intention set out in LSS Act, we examined whether the outcome are in compliance with the right of participation, as expressed in § 19 of UNCRPD. Participation is in the study defined by the International Classification of Functions, ICF. 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 (chi-square 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 support and service is promoting activities of a caring nature rather than fulfilling article 19 of the UNCRPD

The Convention on the Rights of Persons with Disability (CRPD) is reflected in Swedish disability policy, strongest outlined in the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS). The intention of the act is to guarantee good living conditions, inspired by the Independent Living movement, and has functioned as a front-breaking role-model with high demand on recognizing disability rights with personal assistance being the strongest expression towards achieving an active citizenship. The intention of the LSS Act corresponds to the core right of independent living, expressed through article 19 in the CRPD. The management of personal assistance is administered by the Swedish Social Insurance Agency (SSIA). The creation and design of the Swedish social insurance system was justified by developing a framework for social justice based on a uniform redistribution of benefits and allowances between citizens, to serve as a standard of protection for the individual. Mechanisms and measures for managing the administration of social insurance have grown from this context. The implementation of personal assistance within the social insurance system has, however, encountered considerable challenges. The base of individual rights, which molds the essence of the LSS act, counteracts the principle of standardization and uniformity which seems to result that the LSS act bears the character of a borderless nature. This observation is supported by reports from the SSIA that indicates an incomplete and uneven implementation of the act across the country with risks of legal uncertainty and huge increase of costs. Previous studies have concluded lack of precedent-setting court cases and of a uniform definition of what characterizes quality of personal assistance. Studies also shows that perceived quality of personal assistance correspond to general indicators for health- and social care, rather than fulfilling the intentions set out in the LSS act., Avhandling: Att styra rättigheter rättsäkert - Socialförsäkringsadministrationens förvaltning av personlig assistans enligt LSS, Socialförsäkringens betydelse för kvinnor och män med statlig personlig assistans i uppfyllandet av de nationella folkhälsomålen.

Background The Swedish Act regarding Support and Service for Persons with Certain Functional Impairments (LSS), in effect since 1994, guarantees good living conditions for the users and covers a wide range of user groups with regard to age, disability and severity of needs. The aim of the study was to examine the content of the intervention, to get an understanding how of the core concept, “good living conditions” has been interpreted and to gain an insight on how users perceive quality of their personal assistance. Method A literature survey of perceived quality in personal assistance was undertaken. The review was based on qualitative studies conducted during the past 20 year’s implementation of the act. Results The review emerge joint themes that perceives quality of personal assistance by the user. Overall outcomes shows that an efficient personal assistance is characterized by being in control in relation to the environment, trust of feeling safe and secure in relation to the assistant and performed assistance, and that actions through personal assistance as a whole provides well-being for both the user as well as for the family members. Prerequisites for the ability to exercise control by the user, in the management of personal assistance, are emerging as a key condition for the experience of quality. A dilemma for policy intervention is, however, how the principle of user control should be practiced when groups with weak user control require personal assistance. Conclusions The result shows that perceived quality of personal assistance are in line with general health care and social indictors, rather than performing the core concept of the LSS legislation. There is a need to further investigate how perceived quality of personal assistance falls out for users with different degrees of user control., Avhandlingsprojekt rättsäkerhet inom personlig assistans

Background The Swedish Act regarding Support and Service for Persons with Certain Functional Impairments (LSS), in effect since 1994, guarantees good living conditions for the users and covers a wide range of user groups with regard to age, disability and severity of needs. The aim of the study was to examine the content of the intervention, to get an understanding how of the core concept, “good living conditions” has been interpreted and to gain an insight on how users perceive quality of their personal assistance. Method A literature survey of perceived quality in personal assistance was undertaken. The review was based on qualitative studies conducted during the past 20 year’s implementation of the act. Results The review emerge joint themes that perceives quality of personal assistance by the user. Overall outcomes shows that an efficient personal assistance is characterized by the user experience in relation to his or her assistance, trust of feeling safe and secure in relation to the assistant and performed assistance, and that actions through personal assistance as a whole provides well-being for both the user as well as for the family members. Prerequisites for the ability to exercise control by the user, in the management of personal assistance, are emerging as a key condition for the experience of quality. A dilemma for policy intervention is, however, how the principle of user control should be practiced when groups with weak user control require personal assistance. Conclusions The result shows that perceived quality of personal assistance are in line with general health care and social indictors, rather than performing the core concept of the LSS legislation. There is a need to further investigate how perceived quality of personal assistance falls out for users with different degrees of user control., Avhandling: Att styra rättigheter rättsäkert - Socialförsäkringsadministrationens förvaltning av personlig assistans enligt LSS.

According to the Swedish LSS Act concerning Support and Service for Persons with Certain Functional Impairments, personal assistance (PA) aims to promote good living conditions for persons with disabilities. The Act is operationalised by a policy tool, i.e. an instruction by the Swedish Social Insurance Agency (SSIA) to grant PA-allowance. This study explores how this instruction is aligned with the LSS rationale and policy goals. Qualitative content analysis was conducted on a government bill preceding the LSS Act and the SSIA instruction of 1994 and 2019. The result shows that the SSIA instruction deviates from the LSS Act as follows: decreased access to community life, shift towards PA for basic health and care, lack of recipient support, and also increased requirements for control and granting criteria. The results also show that the medical and legal professions have a decisive and strengthened influence on the design of the SSIA instruction while the applicant’s ability to influence the PA-allowance granting process was weakened over time. Thus, the refinement procedures over time that may result in deviations from the original rationale and policy goals. This paper therefore illustrates the importance of maintaining continuous calibrations of policy tools towards original rationale and policy goals of social reforms to uphold compliance.

Personal assistance (PA) in Sweden, regulated by the Act concerning support and service for persons with certain functional impairments (LSS) aims to provide good living conditions for persons with severe functional disabilities. However, studies show increased support for medical and nursing care, i.e. a medicalisation of PA, instead of providing support to promote the PA user to live like others, namely working or studying. This paper aims to understand how this medicalisation of PA has developed. Thematic reflexive analysis of 15 interviews was conducted with public officials at the Swedish social insurance agency, responsible for developing and managing the PA-allowance granting-process. The results reveal that the medicalisation of the PA-allowance granting process has been possible because of external factors, including legal changes in the LSS Act, marketisation of PA services, changed policy priorities, inadequate monitoring of PA outcomes, as well as internal factors, e.g. the extensive complexity of the PA-allowance granting process and organisational pressure on the SSIA officials. This paper demonstrates that the PA medicalisation process constitutes a precarious risk of undermining the LSS policy goals; moreover, it states the importance of maintaining continuous understanding and discussion of the policy outcome over time to calibrate implementation efforts.