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Reporting period: 2017-05-01 to 2019-04-30

The research project ‘User-Led Personal Assistance in the European Union: A Critical Comparative Analysis’ (ULPA) was implemented in the period 1 May 2017 – 30 April 2019 at the European Network on Independent Living (ENIL). The project was led by Dr Teodor Mladenov and supervised by Ines Bulic Cojocariu, ENIL’s Deputy Director. At different stages of the project’s implementation, the research leader collaborated with Dr Yvo Pokern, Senior Lecturer in Statistics at the University College London, and Gabor Petri, board member of the European Disability Forum.

The rationale for the ULPA project stemmed from the significance of personal assistance (PA) for disability rights. The development of PA schemes in the European Union (EU) has been key for ensuring the right of disabled people to independent living and community inclusion, as stipulated in Article 19 of the UN Convention on the Rights of Persons with Disabilities, ratified by the EU in 2010. PA has enabled the choice and control of service users in everyday life and over their support. Unlike most disability services which have been developed and led by professionals, PA schemes have emerged in a bottom-up way, through the activism of disabled people and their struggle for equal rights. PA has been gradually (even if unevenly) introduced in Europe since the 1990s and contributed to the process of deinstitutionalisation that has been actively promoted by the European Commission in recent decades. However, rigorous cross-national comparisons of PA schemes are still lacking. The ULPA project endeavoured to fill this gap.

The overall objective of the ULPA project was to compare and evaluate user-led PA schemes for disabled people across the European Union (EU). The project used a participatory approach to research by including PA users and their organisations in all of its key stages. Theoretically, the research was based on the independent living philosophy, the social model of disability, and disability studies more generally. Research methods included literature review, content analysis, a survey and a checklist. The main outcome of the project was the co-production and piloting of a tool for evaluation of PA schemes from the perspectives of independent living and the social model of disability.
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.
The ULPA project, by co-producing and piloting the PA Checklist, came up with a way to cope with the overwhelming diversity of PA in the EU, thus advancing the commitment of the EU, as stated in the European Disability Strategy 2010-2020, to ‘achieve the transition from institutional to community-based care’. In some EU member states, citizens still lack access to PA, whereas in others, home care services are misrepresented as ‘personal assistance’. Where PA is available, it is often characterised by unequal access, diverse practices of administering, diverse eligibility criteria, differing funding mechanisms and so forth. The pilot application of the PA Checklist strongly suggested that the tool is able to serve as a guide in navigating this unevenness of forms and availability of PA in the EU on the basis of a user-centred and user-led perspective.

The outputs and outcomes of the ULPA project are conductive to future research and advocacy on PA in Europe. One way to proceed would be by seeking to validate the results of the pilot application of the PA Checklist. Another possibility for further development is to apply the PA Checklist to new PA schemes in countries that were not covered in the pilot.

The ULPA project also highlighted the widespread, pan-European concern of assistance users and independent living advocates with cuts to PA. Such cuts have been part of austerity measures which have intensified in the aftermath of the 2007/2008 financial crisis. Austerity has become a major barrier to independent living in the EU, forcing disabled people out of community living and work, and confining them to their homes or to residential institutions for social care, in contradiction to official policy guidelines such as the European Disability Strategy 2010-2020. The results from the PA Checklist pilot confirm that reversing the cuts to PA is an urgent policy priority at the EU level.