State Secretary Cluzel,
State Secretary Chiotan,
Thank you for the invitation to speak at this important event. I would like to congratulate the French Ministry of European and Foreign Affairs, the Romanian Presidency of the Council of the EU, and the European Commission for organising this meeting. This is the first time I am aware of that the ministers responsible for disability issues have come together in this way, and it is very welcome.
It is also timely. We are now approaching a decade since many EU Member States, and the EU itself, acceded to the UN Convention on the Rights of Persons with Disabilities. This provides an opportune moment to reflect on the progress that has been made.
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 and education, 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 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. There are more than one million people with disabilities in the EU who still live in institutions. That is the population of a medium size country.
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 my 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. Let me mention seven take-aways.
First, a primary challenge is that independent living means different things to different people. Yet achieving it is only possible if we share a common vision of what we are working towards. This means we have to agree a shared understanding of what independent living actually means. That common meaning should derive from the legal commitments. Thus, we we must pay close attention to the General Comment on Article 19 adopted by the CRPD Committee.
Second, another hurdle is the idea that independent living is not possible or suitable for some persons with disabilities. During our research, nearly everyone we spoke to told us that they thought achieving independent living was important. But for many this goal did not extend to people with severe impairments, or to older people with disabilities. Yet our research, and that of others, leaves no doubt that all persons with disabilities can and should benefit from independent living. Here again, the law is there to guide us. The CRPD does not distinguish by age, or type, or severity of impairment.
Third, we need to do better in developing strategies for deinstitutionalisation and independent living. It is surprising that in an EU justly proud of its ratification of the CRPD, we still have nine Member States that do not have strategies to implement it. 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.
Fourth, we 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.
Fifth, we need to work better together to achieve deinstitutionalisation and independent living: During our research, we heard of many failures of cooperation, between the local and national levels, and across services housed in a range of ministries not used to talking to each other. 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.
Sixth, must provide practitioners with the guidance they need to implement deinstitutionalisation and independent living: sometimes, even when we know what we want to achieve, we do not know how to do it. Service providers said how much they wanted guidance on how to apply law and policy to the daily realities they experience. It is our responsibility to develop better and more targeted guidance.
Seventh, we need to ensure that the community-based services on which independent living relies are in place: living independently is not just about leaving an institutional setting. It also means being able to access the services you need in the community. Too often, people remain trapped in institutions because they are the only source of essential support. Remedying this means developing a range of good-quality, personalised support services in the community, in particular personal assistance.
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.