On 25 March 2019, the European Network on Independent Living (ENIL) hosted an international conference under the heading ‘The Present and Future of Personal Assistance in Europe’. The conference was organised as part of the project ‘User-Led Personal Assistance in the European Union: A Critical Comparative Analysis’, conducted by Teodor Mladenov, Marie Curie Individual Fellow at ENIL. The event was attended by 32 participants, including disability advocates, academics, representatives of international organisations and policy makers at the EU level.
The conference included talks by six speakers. Ines Bulic, Deputy Director of ENIL, chaired the meeting and facilitated the discussions. Ines began by stating the pivotal importance of personal assistance (PA) for ENIL’s work. She also emphasised that PA is still unavailable in many European countries. In addition, there are schemes which are misleadingly called ‘PA’, while being very different from PA as defined, for example, in the General Comment No. 5 on living independently and being included in the community, issued in 2017 by the Committee on the Rights of Persons with Disabilities.
The first talk was given by Jamie Bolling, Director of the Independent Living Institute in Sweden. Jamie provided the ‘big picture’ by reflecting on the meaning of ‘independent living’ and on PA as a pillar of independent living, making references to the history of the independent living movement. Jamie emphasised that PA should be user-led and that it is about choice, control and the human dignity of the user. She also discussed Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which concerns the right to independent living and includes PA as a key prerequisite for achieving this right. According to Jamie, the future of independent living and PA in Europe looks uncertain and bleak because of the cuts to PA which force disabled people to seek institutional care.
Teodor Mladenov then presented the results of his research on PA in Europe. Teodor had co-produced, together with ENIL’s members, a new tool for assessing PA services – the ‘PA Checklist’, which had been piloted by assessing PA schemes in eight European countries. The results from the pilot application of the checklist make it possible, for the first time, to rank PA schemes according to independent living principles. The outcomes are discussed in a new report on PA, published recently by ENIL. A key conclusion from the research is that cuts to funding undermine established PA schemes pretty much everywhere in Europe.
The concern with cuts to PA was at the centre of the talk given by Ciara Brennan from the Centre for Disability Studies, University of Iceland, as well. Focusing on the Nordic countries, Ciara proposed an innovative multi-level analysis of the strategies used there by various institutions to reduce the access of disabled people to PA. She explained how actions and ideas promoted by the media, the central and local government, the courts, and the lawmakers converge to justify and impose cuts. Therefore, advocates need to address several institutions simultaneously in order to succeed in stopping or reversing cuts.
The discussion before the break included a question about the applicability of the PA Checklist in non-European countries like Lebanon. Teodor pointed out that the checklist is rooted in the vision of European independent living advocates about PA and that a different version of the checklist may emerge in a non-European context. Ideally, the whole process of co-producing the tool needs to be repeated in the new context. However, other panelists stated that ‘choice and control’ are universal values – a point implied in the CRPD and underpinning the mission of the recently created World Independent Living Network.
Another interesting question concerned the involvement of family members (mostly, mothers) as personal assistants. Jamie pointed out that independent living advocates do not agree on this issue and that, in principle, the users should have a real choice in this regard. However, Jamie also shared her own position that a parent or a family member who is also an assistant would hardly allow their child to have full control over the assistance. Moreover, parents age and there comes a point when their inability to cope as assistants would force their adult children, unprepared for independent living, to seek institutional care.
After the lunch, Katarina Ivanković-Knežević, Director for Social Affairs in DG Employment, Social Affairs and Inclusion at the European Commission, spoke about PA as a policy priority for the EU. Katarina emphasised the importance of the CRPD, and particularly of its Article 19 as providing a common ground for policy-making in the EU, related to independent living and PA. However, Katarina also highlighted the overwhelming variety of access to PA, administration of PA schemes, and eligibility criteria for PA in EU member states, as described in research produced by the Commission-supported Academic Network of European Disability Experts (ANED). This diversity of access to PA is a real challenge for disabled people living in the EU.
The next speaker, ENIL’s advocacy officer Frank Sioen, provided an in-depth analysis of recent EU policy initiatives and their significance for the future of PA. Frank discussed the European Pillar of Social Rights, exploring its potential impact on policies of inclusion of disabled people across EU member states. He also spoke about recent developments related to the Working Time Directive and their implications for the working conditions of the personal assistants. Frank then looked at the new regulation for the European Social Fund Plus (ESF+) 2021-2027, emphasising how important it is to use the fund for development of PA schemes instead of residential institutions. Finally, he mentioned the forthcoming European Parliament elections as an opportunity for voters to lobby their candidate MEPs on independent living.
The final speaker was Miro Griffiths from the Centre for Disability Studies at the University of Leeds. Miro iterated the concern with the current crisis of disability rights, which includes cuts to disability support and devaluation of disabled people in public discourses all over Europe. Miro also positioned Brexit within this crisis context, presenting Brexit as a threat to the rights of disabled people in the United Kingdom that reflects and feeds into broader processes of retrenchment and regression. However, he also emphasised that advocacy for PA should not be reduced to short-term policy ‘fixes’ but should be integrated into a long-term strategy that aims to build an inclusive society for all. For Miro, PA is primarily an opportunity to change society.
A discussion followed. One question raised concerned the efficacy of the European Commission’s interventions into national disability policies. There was a call for more progressive and incisive country-specific recommendations under the European Semester, particularly with regard to PA and deinstitutionalisation. In response to a question about the opportunities for funding research on disability, provided by the Commission, Katarina mentioned the Commission’s Action Grants. She also discussed the new disability strategy, currently in preparation by the Commission.
Another issue that was discussed concerned the marginalisation of disability rights in the Brexit debate. Miro linked this to the more general marginalisation of human rights in public discourses around Brexit that focused more on economic priorities at the expense of social issues and rights. A related point made by Miro was that the general (both non-disabled and disabled) public does not understand the argument that institutions and traditional care regimes are oppressive, or even that disability is a rights/justice issue.
The conference finished with a passionate summary of the day presented by Jamie Bolling. A full recording of the event is available on YouTube:
Teodor Mladenov, April 2019