During the first stage of the project’s implementation, from May 2017 until December 2017, the project leader conducted a review of academic literature and policy reports related to PA and to kindred topics such as independent living and deinstitutionalisation. The literature review helped identify key themes and patterns, and resulted in the development of an inventory consisting of 138 statements describing typical characteristics of PA.
In the period January 2018 – March 2018, the project leader used the inventory to conduct a survey among ENIL’s members. Respondents were invited to evaluate the characteristics of personal assistance in terms of their impact on users’ choice and control. The survey was administered online and information about it was disseminated via email, Facebook and ENIL’s newsletter. A total of 54 completed questionnaires were returned, with assistance users constituting a majority among the respondents. The survey helped identify the greatest enablers and barriers to choice and control in a typical PA scheme.
In the summer and autumn of 2018, the project leader used the results from the survey to develop the PA Checklist, a tool for assessment of personal assistance schemes from the perspectives of independent living and the social model of disability. Of the original 138 statements from the survey, 61 were retained in the PA Checklist, based on their significance as enablers or barriers to users’ choice and control. The PA Checklist was piloted in November and December 2018. PA schemes in eight European countries were assessed: Belgium (Flanders), Bulgaria (Sofia), Ireland, Serbia, Slovenia, Spain (Andalucía), Sweden and the United Kingdom. Based on these assessments and the scores from the earlier survey, each PA scheme achieved an overall mean score indicating the degree to which the scheme enables or hinders users’ choice and control.
The results from the pilot implementation of the PA Checklist made it possible, for the first time, to rank PA schemes in Europe according to independent living principles. In the sample, PA provided at the national level in Sweden emerged as the leader in terms of enabling users’ choice and control, whereas the Bulgarian scheme provided by the Sofia Municipality was assessed as most restrictive. Cuts to PA stemming from austerity measures were a cross-cutting concern.
The project’s outcomes were disseminated through seven conference presentations, four academic peer-reviewed articles, three chapters in edited volumes, six project updates published in ENIL’s newsletter, and a research report presenting the PA Checklist. The results were presented at the project’s concluding conference titled ‘The Present and Future of Personal Assistance in Europe’ and held on 25 March 2019 at ENIL’s headquarters in Brussels, Belgium. The event was attended by 32 participants and included talks by six speakers. Attendees included disability advocates, academics, representatives of international organisations and policy makers at the EU level. The conference was live-streamed on YouTube.
