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

Abstract

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.

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

“…In the mixed regression model (Table 7), men were found to receive more PA for "chores" than women. This corresponds to studies showing that women with severe disabilities receive less home care than men, irrespective of them living alone or living with a partner [8,18]. Reasons for this are probably normative, i.e., men are perceived to need more support for household chores than women.…”

“…Supervising activities may be seen as contradictory to the intentions of Article 19 of the UNCRPD and the policy objectives of the LSS Act [2]. It cannot be ruled out that precedential adjudgements may have contributed to a shift of eligible users with extensive needs [8]. The development of healthcarerelated items over time, particularly "supervision", demonstrates a shift towards a medical reform and reveals that the implementation of the LSS's Act represents a sliding interface towards healthcare.…”

“…Still, the knowledge as to whether the intention of the LSS Act, i.e., participation in society has been met, is limited. A cross-sectional study of the distribution of PA activities showed unequal access to participation across user groups and moreover illustrated that reported activities were predominantly of a caring nature [8]. However, there are no longitudinal studies that show changes in PA activities over time.…”

Everyday travel for families with children using wheelchairs: parents’ perceptions of constraints and adaptation strategies

“…Furthermore, this paper indicates that the opportunities for everyday mobility might increase for the whole family if they receive external, governmental support, such as personal assistance (see Von Granitz et al 2017). Governmental support can reduce coupling constraints within the family, making it easier for these families to have individual daily trajectories, rather than having to constantly negotiate their trajectories due to constraints related to the disability.…”

“…Sweden has 'the Act Concerning Support and Service for Persons with Certain Functional Impairments' (hereafter LSS), which regulates the external support disabled people can receive from the government. This support includes, for instance, the right to have personal assistants (Von Granitz et al 2017). However, even with LSS in effect, parents often feel they have to fight for the right to receive governmental support (Brennan et al 2016;Miettinen, Engwall, and Teittinen 2013).…”