Thank you for the invitation to speak at this important event. I would like to congratulate the Danish Presidency of the Council of the EU, the European Commission and the European Disability Forum for organising this conference, and for your continuous and explicit commitment to fulfilling the rights of persons with disabilities.
The conference is particularly timely, coming at a time of culmination of several important initiatives: the second review by the CRPD Committee of the EU’s implementation of the Convention, the halfway point of the EU’s strategy on the Rights of Persons with Disabilities and the success of many flagship initiatives, and most recently, the adoption of Council Conclusions on the social inclusion of persons with disabilities. Next year will mark the 20th anniversary of the adoption of the text of the Convention by the UN General Assembly. All of this together provides an opportune moment to reflect on where we are, and where we must go.
I have been asked to speak about the state of play concerning independent living. As we discuss how we can improve everyday life for persons with disabilities in the EU, this is a good place to start. The right to live independently in the community, as set out in Article 19 of the CRPD, is a sort of ‘litmus test’ for the implementation of the Convention as a whole. If Article 19 is not fully implemented, many other articles – such as those covering accessibility, employment, education, legal capacity, to name but a few – will be impossible to achieve.
However, the gap between rhetoric and reality concerning Article 19 is especially stark. Both the EU and its Member States regularly and explicitly acknowledge the need to achieve independent living for persons with disabilities. But this has not yet been transformed into meaningful change on the ground.
First, the figures. According to Eurofound, there are more than 1.4 million people with disabilities in the EU who still live in institutions. More concerning than the actual number is the fact that this represents a regression – numbers in institutions are growing. On top of that, I think we all recognise that this figure is most likely an underestimation, but given the dearth of data collected in this area, it is impossible to land on an exact number.
These fellow members of our society are often prevented from making basic decisions about their own lives. Everyday choices about when to have dinner, when to go to sleep or who to live with are made by others on their behalf. This undermines human dignity and reinforces exclusion and isolation.
Furthermore, many millions more people with disabilities live in the community, but not as part of the community. They are prevented from gaining the foothold in social life offered by having a job, often trapped instead in segregated sheltered employment schemes. They are stopped from enjoying their hobbies by an absence of personal assistance, prevented from getting around their local area by inaccessible public transport, and held back by negative stereotypes and – often – outright stigma and abuse.
In acknowledging this situation, we must bring to a close the debate about whether there is a requirement to promote deinstitutionalisation as a matter of law. It is clear that it is a legal requirement under the CRPD, as repeatedly affirmed by the CRPD Committee.
What can we do to turn the law into real change on the ground? Research by the Fundamental Rights Agency set out to bridge that gap. During two years of in-depth fieldwork research, we explored what works and what does not work in practice by speaking to as many stakeholders as possible, from national and local policymakers, to persons with disabilities and their representative organisations, and the staff of institutional and community-based services. Their experience tells us some of the foundational issues that are impeding independent living.
First, a primary challenge is that independent living means different things to different people. A lack of shared understanding of what independent living truly means continues to hinder progress. Some stakeholders equate it with minimal support, while others question its feasibility for those with complex needs. Yet achieving it is only possible if we share a common vision of what we are working towards and a shared understanding of what independent living actually means. That common meaning should derive from our legal commitments, namely under Article 19.
We must do better in developing strategies for DI and independent living. It is surprising that in a European Union that is justly proud of its ratification of the CRPD, there are still some Member States that do not have dedicated strategies to implement it, while others have expired without being renewed. When it comes to financing, both the EU Member States and the European Commission should ensure that EU funds support community-based services and are not invested in institutions or services which reinforce segregation. This latter point was made especially strongly by the CRPD Committee in March, and it is an aspect which should receive particular attention as we move forward in discussions around the new Multiannual Financial Framework.
We also need to change attitudes towards persons with disabilities. We still have a long way to go to respect persons with disabilities as our fellow rights holders, whom we should support to be empowered to live full, rich lives, not in institutions but in our communities. We need to challenge the persisting paternalism that says people with disabilities should be ‘looked after’ and ‘cared for’. Positive images of persons with disabilities participating in everyday life are particularly important for tackling stigma and changing prevailing negative attitudes.
We must work better together. In our research, we heard of many failures of cooperation, between the local and national levels, and across services disparately housed in a range of ministries. Practitioners working on the frontlines told us that they are often ignored in the development and roll out of policy. Local communities are not sufficiently engaged with and prepared to support independent living.
Finally, we need to ensure that the community-based services on which independent living relies are in place: leaving an institutional setting is only the very first step in realising Article 19. People must be able to access the services they need in their communities. Too often, people remain trapped in institutions because there they find the only source of essential support. Remedying this means developing a range of good-quality, individualised support services in the community, for example accessible housing and healthcare, personal assistance, and person-centred plans.
As you know, there is much to do in order to get to where we need to be. However, as we move towards the realisation of Article 19, we stand upon evidence, expertise, lived experience and lessons learned, all of which can guide us. FRA is publishing one such body of research in three weeks’ time. Our new comparative report explores the law and practice on protection against, prevention of and responses to violence against persons with disabilities in institutions in the EU. While our shared ambition may be deinstitutionalisation, until we get there, we must do all we can to ensure that the rights of persons with disabilities in institutions are upheld, and that they are free from violence, abuse and neglect. In this regard, I welcome the 2024 Commission Notice Guidance on independent living and inclusion in the community and in particular the inclusion of a question regarding preventive measures against violence in institutions, contained in the self-assessment tool.
Our report shows a litany of failings, from the legislation and safeguards purporting to protect people, to the structural safeguards and mitigating measures aimed at preventing violence, to the processes in place to respond to incidents of violence and to ensure accountability.
The breadth and depth of the manifestations of violence we recorded are staggering. Some were explicit, some subtle. Some were physical, others psychological or emotional. We heard reports of neglect, deprivation of liberty, financial abuse, isolation and overmedication. In all of the voices we listened to, we learned of lives devoid of dignity and respect. These instances of violence and abuse are supported by a lack of resources, in the form of budgetary restrictions and staffing issues, by a lack of measures to empower and raise awareness of disabled people, and by a lack of safe, confidential and accessible recourse and redress. This is all underpinned by the normalisation of the institutional culture in our societies. Although some Member States have made progress, the culture and practices embedded in the medical model remain more prevalent than those borne of the social model. Individualised, person-centred pathways into the community remain more the exception than the rule.
In the report, FRA proposes a number of opinions based on our findings. They suggest how to strengthen protection from violence, how to amplify prevention through monitoring and how to enforce responses to violence. The opinions are applicable to all who purport to uphold the rights of persons with disabilities, from policy-makers, to accreditation and oversight bodies, to justice officials, to service providers and staff, and to national human rights structures and civil society. I invite you to read the report once published on 27 November, and to engage with me and my colleagues here today on any questions you may have.
Dear colleagues,
The CRPD turns the long-standing situation of segregation and exclusion of persons with disabilities into a positive vision of living in the community with choices equal to others. Article 19 reminds us that the core elements of the convention – autonomy, inclusion, choice, control, participation, equality – come to fruition when persons with disabilities can participate fully in the lives of their communities.
Increasingly, we know how to deliver on the duty of deinstitutionalisation. You can count on the support of the FRA as you work towards that goal.
Thank you.