Independent living for persons with high support needs: a right, a challenge, a duty
On Tuesday 18th May, EASPD was invited to participate in the IV Day of independent living and personal assistance, organised by Plena Inclusion Castilla y Leon and focusing on persons with higher support needs.
Persons with severe disabilities are often the last ones to be reached by measures addressing their independent living and quality of life. Often the burden of care is left in the hands of their families, with terrible consequences in terms of mental and physical charge. The alternative is about residential services, where the support they receive is traditionally more about covering basic needs in terms of hygiene and nutrition and less about participation in social activities and in finding ways to communicate and address personal preferences and needs.
The event highlighted how people with high support needs can benefit of personal assistance and support for independent living. "Personal autonomy must be for everyone without exception" is part of the vision of Plena Inclusion, and a challenge on which the Federation and its members are committed to work for.
During the event, participants could hear about the state of play for deinstitutionalisation in Europe from EASPD Policy Officer Irene Bertana, followed by national and regional focus and personal experiences. Patricia Nava, from Salamanca University shared some data about persons with higher support needs in Spain, who are more than 63.000 of which the 80% cannot choose where to live, or with whom to live, the 70% never participate in activities of representation and claiming of rights, and the 38% lack friends or social networks. The Plena Inclusion projects "Todos somos Todas" and "Mi casa", developed in collaboration with Salamanca University, are committed to an empowering and personalised approach, valuing individual choices and talents in the areas of housing, communication, supported decision-making, self-care and employment.
Although unfortunately these projects are still not for all the persons that would need them, they already proof high impact on the life of those who are involved, as showed in the roundtable of experiences. Alejandro told how his life had changed since he has had the necessary support: two personal assistants, a computer-connected communicator, and a great desire to tell his life project has meant that he has combined the activities of his centre with travelling around Spain as a speaker to share his life experience. Another life story was that of Álvaro, that his mother Paqui shared as an example of "life with meaning". Her and his life changed starting from receiving 24hours personal assistance that gave Alvaro and starting to socialize and explore the world around him. In this period and when he found his place in sheltered housing he stopped needing a wheelchair to move around and his behavioral problems ended.