Over 250 representatives of national governments, disability advocates and others reunited in Denmark on 6 November to discuss a pressing topic: how to advance independent living for persons with disabilities.
Setting the scene: urgent need for action
The Danish minister for Social Affairs and Housing, Sophie Hæstorp Andersen, opened the conference by stating that
despite our efforts and achievements over the past years on accessibility, limited access to services remains one of the main barriers to participation for persons with disabilities.
She reminded attendees that Europe must lead by example and step up its efforts towards independent living.
The European Commissioner for Equality, Hadja Lahbib, underlined the urgent need for action in a video message:
I am pleased to announce that next year we will put forward new actions in the EU Strategy on the rights of persons with disabilities. We are already assessing needs on the ground.
Member of the European Parliament, Marianne Vind, highlighted the attitudinal barriers to inclusion:
8 out of 10 Danes feel uncomfortable being around persons with disabilities. It’s a shocking statistic. It shows that the inclusion of persons with disabilities is still far from being achieved.
The President of the European Disability, Ioannis Vardakastanis, closed the opening remarks by painting a stark image of people segregated in institutions. He stated:
Europe has a deep structural and social problem. It cannot wean itself off its dependence on institutions. Despite decades of advocacy and international commitments, the number of people in institutions is not declining. It is rising.
He reminded participants that over 1.5 million persons with disabilities live segregated in residential institutions: more than the population of Copenhagen.
Individual support at home: need for choice and control
The first section of the agenda discussed how authorities could guarantee individual support and personal assistance at home.
It started with a speech by Sirpa Rautio, Director of the EU Agency for Fundamental Rights, who stated:
Leaving an institution is only the first step in realising article 19 (of the UN Convention on the Rights of Persons with Disabilities)”. People must be able to access the services available in their community, such as accessible housing, healthcare, and personal assistance.
She expressed surprise that many EU countries lack a strategy to improve independent living.
The second speaker was Jamie Bolling, Co-chair of the European Network on Independent Living. The presentation notably highlighted the importance of ensuring adequate income support:
As persons with disabilities, we are always, in one way or another, the poorest of the poor wherever we live.
The first panel of the section discussed best practices and challenges. It included
- Łukasz Krasoń, Secretary of State, Ministry for Family, Labour and Social Policy from Poland (video message)
- Benjamin Voisin, Directorate General of Social Cohesion, Ministry of Health, families and Disabled People, France
- Kirsi Konola, president of European Association of Service providers for Persons with Disabilities (EASPD)
- Jamie Bolling, co-chair of European Network on Independent Living (ENIL)
Main conclusions included:
- There is a lack of adequate support in EU countries, with fragmented systems and simplistic solutions that do not allow full independence.
- Accessibility of housing includes having proper support and safety, including during emergencies and evacuation.
- It can be difficult to assess quality in an individual dwelling. It is essential to develop quality control systems and a complaint mechanism that works.
The section closed with a panel on being included in the community. Speakers included:
- Domna-Maria Michailidou, Minister of Social Cohesion and Family Affairs, Greece
- Milan Šveřepa, Chief Executive of Inclusion Europe
- Alfonso Lara-Montero, Chief Executive Officer, European Social Network
Main conclusions included:
- Even in countries where the number of persons with disabilities in institutions is lower, it doesn’t necessarily mean there is a good provision of services in the community. A lot of responsibility still falls on families and informal carers.
- Supporting the self-advocacy movement in general will enable more persons with disabilities to be able to have a say in the design of services that facilitate independent living
- True inclusion is about having no differentiation of the ability to decide, and uninhibited access to choices.
Accessible and affordable homes
The second section focused on the accessibility of housing – a significant barrier for persons with disabilities.
It started with a panel on best practices on accessible housing. The panellists were:
- Tobias Nyhuus, National Accessibility Expert, AccessibleEU
- Tatiana Marquez Uriarte, Member of the Cabinet of the EU Commissioner for Energy
- Bent Madsen, Board of Directors, Housing Europe
- Malin Ekman Aldén, Director-General of the Swedish Agency for Participation.
They stated that:
- Housing accessibility needs to be built in from the start. This means including persons with disabilities in the design rights from the beginning.
- It is important to ensure social diversity within neighbourhoods. Social and accessible housing should not be built in blocks, but included in the wider community.
- There is a big mismatch in the demand for housing and supply, with a particular lack of social and accessible housing. As Europe is ageing, the need for accessible housing is increasing.
- There is also a lot of discrimination in housing when it comes to persons with disabilities. Factors that wrongly suggest you cannot pay your rent can mean you are not selected as a tenant and cut off from accessing housing. Women are particularly at risk of being excluded.
The panel was followed by a testimonial from William Korte, who shared how segregation and lack of choices left him disillusioned and powerless.
Credits: Jennifer Krames / Danske Handicaporganisationer
A presentation by researcher Camilla Ryhl on universal design closed the day.
Looking forward: the next phase of disability rights in the EU
The second day opened with a speech by Ana Carla Pereira, Director for Equality and Non-discrimination at the European Commission. She explained that independent living is clearly enshrined in our EU Strategy on the Rights of Persons with Disabilities. However, it is fundamental to guarantee legal capacity. Affordable and accessible housing that allows independent living is also essential, as well as community services.
It was followed by a presentation from Massimiliano Mascherini from Eurofound. He explained that 13 EU countries have more persons with disabilities segregated in institutions than a decade ago, and only 11 countries have seen a decrease.
The conference continued with Olivia Dahl, a post-doctorate student at the University of Copenhagen. She explained her focus on ‘Crip Theory’, and how it applies to redefining the binary of ‘what is normal’. She touched on the example of disability assessment, which often focuses on what is ‘wrong’ with people and what they cannot do.
The last panel focused on the revision of the European Disability Rights Strategy. It included:
- Sophie Hæstorp Andersen, minister for Social Affairs and Housing, Denmark
- Christina Flourentzou, Director of the Department for Persons with Disabilities, Cyprus
- Ana Carla Pereira, director for Equality and Non-discrimination, DG JUST
- Thorkild Olesen, Member of European Disability Forum Executive committee
Main conclusions included:
- The Commission reported that the main themes that came from consultations were legal capacity, assistive technology, supporting Member States in disability assessments, the needs of women with disabilities and EU external action.
- We need indicators to help us better monitor our progress in implementing the actions of the Strategy and need funding from the European Social Funds in the Member States.
- The second half of the strategy should be guided by the demands of the disability movement and the concluding observations of UN experts. It should also influence the next EU Budget, to ensure money supports objectives.
Danish Minister for Social Affairs and Housing, Sophie Hæstorp Andersen, closed the Conference by ensuring that Independent living and housing remain priorities of this presidency.
Featured photo credits: Jennifer Krames / Danske Handicaporganisationer