Ending the segregation of persons with disabilities (PWDs) and enabling them to live full, independent lives within the community requires political will and substantial investment in social and community-based services. Above all, huge support is needed for their families who – forgotten by public policies - carry too great a burden on their own
The new European disability strategy 2021-2030 places great emphasis on securing independent living for the more than three million Europeans with disabilities who currently live in institutional settings. However, the transition to their new life in the community will not be possible without proper accessible and affordable community-based services, which are lacking in the EU.
Families play a crucial role in de-institutionalisation, but are often left to fill in the gaps in public support. Faced with no alternatives, they are either forced to place their family member in residential care or they take on the role of carers themselves, which takes a heavy toll on their health and finances, revealed the hearing entitled Towards Independent Living, held by the European Economic and Social Committee (EESC).
Chaired by the president of the EESC's Thematic Study Group on disability rights Pietro Barbieri, and moderated by Group members Marie Zvolská and Hana Popelková, the hearing held on 16 September brought together representatives of the European Commission and the Slovenian EU presidency, MEPs, and several disability organisations.
More than one million children and adults under the age of 65 are currently in residential care in Europe. The number of institutionalised PWDs aged 65 and over is more than two million, the Commission's Inmaculada Placencia Porrero told the hearing.
The EU's new disability strategy really pays a lot of attention to their transition to community living, but without preparing the community, without accessible services, including housing, it will not be possible for this transition to happen, she said, adding that the Commission will issue guidance to Member States on how independent living can be improved.
Ensuring a dignified life in the community for PWDs, enabling them to prosper in their local and family environment and to avoid social marginalisation and segregation, requires action both at the highest political level and at local level. This requires funding for the policies and services, as well as training, education campaigns to break the stigma surrounding disability, and extensive support for families.
There must be a smart hybrid combination of family care and local and professional support. Public authorities should make sure that this system is both available and affordable, said Luc Zederloo from the European Association of Service Providers for Persons with Disabilities (EASPD).
This requires the inclusion of community-based services in the mainstream system and training for staff to raise awareness of the specific needs of PWDs.
It also is important to fight prejudice and stigma, which result in the perception of PWDs as people unable to live independently.
Whatever we develop, it should be based on the rights of the individual and the family. We don't have to repair but support people to live the life they want, Mr Zederloo stressed.
We have to start to see people from the perspective that everyone has something to contribute and should have the choice to live independently and to make decisions about their own life, said Ines Bulic, from the European Network for Independent Living (ENIL).
It should also be ensured that PWDs are not simply transferred to smaller institutions where they still have no agency over how they live and who they live with. Other forms of segregation, such as sheltered workshops or work without any employment rights or pay, should not be allowed either.
The ENIL has launched a call for action demanding the right to family life for all children with disabilities. To secure this, families need to be supported from the very start in all possible ways, hence the need to invest in early childhood intervention. This implies ensuring an early and transdisciplinary assessment of child conditions and family needs, including with regard to siblings. Such whole family support is paramount to prevent family separation and ensure that children grow up in the best possible conditions.
HARSH REALITIES OF PWDs and FAMILY CARERS
The situation on the ground is far from ideal. With institutional care still predominant in Europe and without proper services, financial support or the provision of personal assistance for their family member with a disability, placing them in an institution may seem like the only alternative for many families. Due to poverty and the stigma surrounding disability, the number of children placed in residential care is still rising.
Petr Laník, a young man with disabilities from the Czech Republic, told the hearing that he had spent 27 years in an institution before he was moved to sheltered accommodation where he was taught to live more autonomously and was given a chance to lead a more independent life.
The regime in my institution was very strict, I had very little contact with my family. It was sad there without my mother. She had to put me in an institution as she had no other options, Mr Lanik recalled.
Families who opt not to place their child or relative with a disability in an institution take on the role of family carers, which is mostly taken on by women. The price they pay is enormous: forced to give up their jobs, they can be pushed to the brink of poverty. The lack of social recognition of their role and feelings of isolation and abandonment may lead to their social exclusion or seriously impair their health.
A recent UK study, presented at the hearing by Haydn Hammersley, from the European Disability Forum, found that the poverty rate increases from 8% for the general population to 28% for households with one PWD. This rate further increases for families that have a child with disabilities, with 35% of them living below the poverty line. Among single-parent households in which one family member has a disability, 43% live in poverty.
There are many families who have lost all hope. We suffer from depression, panic attacks, heart conditions and neurological illnesses. We basically live an emotional drama. This gives rise to unrest in our family units and has an impact on the psychological development of our children with disabilities, said Elena Improta, caregiver and director of the Italian association Oltre lo sguardo.
According to Camille Roux of COFACE Families Europe, it is high time to recognise the essential work and value of family carers and to take their needs into account if we want to secure the transition to independent life for PWDs.
We need urgent action at the political level. We must ensure that the transition happens in support of family carers and not at their expense. In other words, we must stop substituting family solidarity for the state's obligation to deliver on the promises of the UNCRPD, she concluded.