Brussels, 23 September 2020 — On 21st September, the European Network on Independent Living (ENIL) and MEP Katrin Langensiepen hosted an online event to address the key question of why the European Union continues to fund institutions for disabled people. Disabled people, activists, legal experts, representatives of the Committee on the Rights of Persons with Disabilities and the European Ombudsman set out the arguments for stopping investments into segregated living arrangements and sheltered workshops, and called for the full implementation of Article 19 (living independently and being included in the community) of the UN Convention on the Rights of Persons with Disabilities (CRPD).

The events’ three key messages were:

1. Progressive realisation of the right to independent living does not allow for investments in institutions, of any size, even when these are presented as “transitional” measures.
2. Lessons from the ongoing pandemic and the current programming period call for a renewed commitment to CRPD implementation and investment into personal assistance and other community-based services in the post 2020 financial period.
3. Shared management of EU funds places responsibility on the European Commission to ensure that these are spent in line with the CRPD, as interpreted in the General Comments and the jurisprudence of the Committee.

Kapka Panayotova, the former President of ENIL, and MEP Katrin Langensiepen opened the webinar by warning of the catastrophic impact COVID-19 has had on disabled and older people living in institutional care settings, with an urgent call to the EU to strengthen community-based services and personal assistance for these groups.

Prof. Gerard Quinn, an authority on the CRPD, highlighted the importance of progressive realisation under international law. He stated: “The dynamic of change must be in one direction. It most assuredly does not mean that stepping down from 100 bed institutions to 12 bed institutions is a form of ‘progress’, much less ‘progressive achievement’, as some have asserted. The reality is that for those 12 people, their only life into the foreseeable future will be in an institute – some progress.” 

Disability rights activists and researchers from Austria, Hungary and Portugal went on to provide examples of recent investments of the European Structural and Investment Funds (ESI Funds) into institutions. These range from new and renovated institutions across Austria, financed from EU’s agricultural fund, to the transformation of 30 larger institutions in Hungary into 150 smaller settings located largely on the outskirts of villages. Speaking of the situation in Portugal, where new institutions were also built with EU funds, Joao Varela questioned the “transitional” nature of these facilities and stated: “Personal assistance and community based services should be the norm in the EU. EU should have started with this, and not with the institutions.

Jonas Ruškus, Vice Chair of the CRPD Committee – the independent body of experts in charge of monitoring the Convention – expressed his disappointment that the EU continues with discriminatory practices against disabled people, which he attributed to four factors: the lack of harmonisation of national laws with the CRPD; the prevailing medical model of disability, resulting in guardianship laws and decisions on who is “fit” to live independently; lack of awareness about the CPRD and the human rights model of disability; and failure to involve organisations of disabled people in all states of CRPD implementation at EU level. Speaking of his own country, he noted: “In Lithuania, deinstitutionalisation started in 2014. From then, the number of people in institutions did not decrease, despite the creation of new group homes with EU money. People remain under the control of institutions, they are not provided access to reasonable accommodation in mainstream work nor in education”.

Catherinne Pedreros, from the CRPD Committee’s Secretariat, referred to the core elements of the right to independent living, set out in the General Comment 5. In addition to the need to use any available funding to develop independent living services, they include the right to legal capacity, non-discrimination and the need for a concrete action plan on independent living, to name a few. Ms. Pedreros spoke of the two major inquiries under the Optional Protocol to the CRPD, which focused on independent living – in relation to the UK and Hungary. In both cases, the Committee found grave and systematic violations of Article 19: in the UK, where the Government drastically cut funding for independent living services, and in Hungary, where both state and EU funds have supported the building of a large number of new institutions.

In the final part of the webinar, Steven Allen, the Co-director of Validity Foundation, delved deeper into reasons why EU funds continue supporting institutions. Among other, he pointed to the influence of service providers: “There is a very strong lobby of providers of services to persons with disabilities who argue – increasingly loudly – that some investments in institutions are acceptable […] in essence, there are many who are that small institutions, sometimes called “group homes”, are necessary and acceptable – indeed, they sometimes suggest that disability rights activists want to see people with disabilities chucked out on the streets, simplistically ignoring the point that it is Governments who must promote genuine community-based alternatives.” Mr. Allen reflected on the legal actions taken by his organisation, and ENIL, to challenge the Commission’s position, noting that groundwork has been laid for further action to see CRPD and EU Charter rules applied to decisions made on specific projects.

Mr. Nomunds Popens, Deputy Director General at DG Regio, in the European Commission, responded to criticism by explaining that the Commission never sought to promote investments into institutions, but that some are acceptable: “The process of deinstitutionalisation is really a complex one. It is about really changing all these parts […] in our society, starting from access to basic services, having adequate support, having everything in place, and that takes time.” He announced more stringent rules in the next financial period, but also asked for further clarifications on what is an institution and whether investments into institutions for disabled to improve their “energy efficiency” are allowed under the CRPD, for example. In relation to specific cases mentioned during the webinar, he confirmed that the Commission has recently stopped a call that would see further investments into institutions in Hungary – showing that such interventions are possible.

The last speaker, Maria Moustakali, from the Office of the European Ombudsman, explained the two decisions by her office dealing with EU funds use – on Hungary, and on Portugal and Hungary — initiated by the Validity Foundation and ENIL respectively. In the latter, the Ombudsman found that the Commission should have stopped the investment in Hungary as soon as it had information this went against the CRPD. Importantly, Ms. Moustakali announced a new potential inquiry on the use of EU funds, relation to independent living: “In light of the problems encountered in institutions during the COVID pandemic, the Ombudsman is exploring the possibility of further work in this area, possibly together with the European Network of Ombudsmen, as the ESIF funds are implemented in the management of the Commission and the national authority.

The recording of the webinar and the presentations are available at this link.

[The photo shows an institution in Austria, co-funded by the European Union, which includes 3 residential groups of 7 persons with disabilities and a sheltered workshop with 32 places for persons with physical and intellectual disabilities.]