Equality, non-discrimination and racism People with disabilities

On 9 March, FRA Director presented the FRA report on the experiences of people with disabilities in the EU in institutions to the UN Committee on the Rights of Persons with Disabilities (CRPD). The presentation took place in Geneva.

Dear Chairperson Kim, dear members of the Committee, 

Allow me to begin by thanking you for the invitation to attend this opening session. It is reflective of the strong relationship between the European Union Agency for Fundamental Rights – or FRA – and this Committee. We saw this last year, when the Agency delivered an information session to members of the Committee on EU law, and again with the strong engagement during the Committee’s constructive dialogue with the European Union. We were happy to contribute to the Committee’s work on disability-based violence earlier this year. Much of FRA’s work hinges on the data we collect, which comes from all corners of the EU. Our survey findings disaggregate data by disability, amongst other factors, including gender, age, religion and ethnicity, and often in combination.  

For your information, FRA is the EU’s independent human rights agency. We provide evidence-based advice and expertise on fundamental rights to EU institutions and Member States as they implement EU law. The Agency is also a member of the EU’s CRPD Monitoring Framework. 

I am very pleased to be here today to present our recent major report to you – ‘Places of Care = Places of Safety? Violence against persons with disabilities in institutions.’ This report is the culmination of comprehensive desk research carried out in 30 countries – the 27 EU Member States, and FRA’s three observer countries, Albania, North Macedonia and Serbia – and fieldwork in 10 Member States. In the latter activity, over 140 interviews were carried out with policy makers, services providers, human rights bodies, disabled persons’ organisation, and disabled people with lived experience. 

It was thanks to the willingness of this last group, to share their experiences, that allowed us to fully grasp the breadth and depth of the violence that is prevalent in institutions across the EU. The stories we heard include explicit forms such as sexual and physical violence, forced sterilisation and arbitrary use of restraints, and more subtle forms, such as verbal and psychological violence, financial abuse, deprivation of liberty and overmedication. These examples are only the tip of the iceberg – they are underpinned by an institutional culture that is paternalistic and rooted firmly in the medical model of disability. This culture prevails across the EU despite ratification of the CRPD and political commitment to community inclusion. 

Built upon this foundation, and enabling the violence are three key gaps: a lack of resources, awareness and redress. In the first gap, budgetary restrictions and staffing issues were mentioned in every desk research and fieldwork report.  

When it comes to awareness, what was striking was the lack of education and awareness around rights and protections. Mistreatment and violence are often normalised due to the fact that a disabled person is not aware that their rights are being violated. 

In respect of the third gap, barriers to seeking redress and a fear of retaliation came through clearly. The fieldwork shows an increased awareness of the depth of dependency that people in institutions can have on staff. The perceived need to remain compliant in order to maintain the provision of care takes precedence over the quality of that care.  

Based on these findings, the report outlines a three-fold framework to combat the violence. The first action must be to examine the legal and policy frameworks that protect individuals from different forms of violence. The second action relates to structural safeguards to prevent violence from happening in the first place. Finally, the third action is to analyse processes to respond to incidents of violence, to ensure accountability.  

The report makes many recommendations for addressing the significant shortcomings we see. For example, when it comes to protection, FRA calls on Member States to align national legal and regulatory frameworks with the CRPD. We need to address the absence of data on persons with disabilities in institutions. Above all, FRA maintains that deinstitutionalisation is the only way to protect against the manifold assaults on the fundamental rights of people with disabilities living in institutions. Therefore, we call on Member States to progress this, while at the same time ensuring that there is a well-developed and well-resourced community awaiting those people who will move out. FRA also calls on the European Commission to ensure that EU funds do not contribute to the establishment or maintenance of institutional settings. 

When it comes to prevention, FRA recommends that monitoring practices be harmonised and standardised, and that monitoring bodies have independence, resources and teeth, in order to sanction non-compliance. 

Finally, when it comes to response, FRA emphasises that reporting must be strengthened through safe, accessible and confidential reporting mechanisms. Guidance and training should be issued to officials likely to interact with victims, including police and the judiciary. Structured coordination between relevant authorities must be developed to address the fragmentation that leaves victims without support.  

As this report identifies, and as I am sure you see throughout all of your work, there is an urgency to do all we can to preserve the hard-fought-for rights we are discussing here. Fundamental rights, democracy and the rule of law are under near-constant threat. Where once we may have demonstrated complacency, reassured that we operated in a world order underpinned by rights and values, we are now witnessing rollbacks on a daily basis. Anniversaries – such as the one we celebrate this year, 20 years on from the adoption of the CRPD – provide us with an opportunity to recall the importance of why we create such international conventions. It is opportune that the enhancement of the EU’s Strategy on the Rights of Persons with Disabilities will be adopted in the coming months, breathing fresh air into a 10-year strategy containing ambitious goals. 

I wish the Committee all the very best for this coming session. Amidst the difficulties you and other Treaty Bodies are facing, rest assured that you have the full and unequivocal support of the Fundamental Rights Agency. 

Thank you.