“Being cared for in an institution means being away from home, often in a different town or region altogether and having limited contact with the world outside, including with family and friends. I feel this care sets people apart, segregates and labels them”. This is what a resident of a former institution told us when we launched our report ‘Developing Community Care,’ 10 years ago.
On the contrary, in our report we define community care as “any form of support and care provided in the local community enabling people to overcome or manage any condition, disability, or life difficulties they may face. Within community care, a key aspect of quality is ensuring the involvement of people using services.” Community care is linked to the process of de-institutionalisation, which we describe as “a shift in the type of care provided to vulnerable people from institutional services to community-based care.”
ESN member, the Spanish Secretariat of Social Rights has been preparing a de-institutionalisation strategy over the past months and in the context of Spain’s Presidency of the European Council we recently organised a seminar with the Spanish and Catalan governments to discuss this shift in the model of care that has gained renewed momentum with the European Care Strategy, launched by the European Commission last year, and the launch of the first UN International Care Day on 29 October.
The term de-institutionalisation was originally used in 1963 in the United States Community Mental Health Act. Since then, it has been increasingly used in relation to social services for people with long-term care needs, but also in relation to children and young people in child protection. The concept of de-institutionalisation is very much related to that of ‘total institution’ from Erving Goffman, which he uses to refer to residential environments that effectively cut off residents from the larger society.
When we talk about community care, it is important to underline that community care is not just about creating smaller care units or replicating an institutional residential care model at a smaller scale. This notion of institutional culture was coined in 2009 by the European Ad Hoc Group on the Transition from Institutional to Community Care with the aim to define the characteristics of institutions where care is provided.
The Group argued that external features such as walls, gates, or large secluded buildings are “the most visible elements but not necessarily the most important in defining what an institution is.” Instead, they proposed to concentrate on internal characteristics like:
- Depersonalisation or the removal of personal possessions;
- Rigidity of routine -illustrated by having fixed timetables for waking up, eating and activity regardless of personal preferences or needs;
- Block treatment or processing people in groups without privacy or individuality;
- Social distance symbolising the different status of staff and residents.
Hopefully you do not identify any of these in your services but if you do, then it is important that you address them.
The process of transition from de-institutionalisation to community care is very much like a journey. It has been a journey for us too at the European Social Network. From early days when we published ‘Towards a People’s Europe,’ promoting people’s choice of care through personal budgets to recent publications on quality of community care, we have also learnt a lot about person-centred care and promoting people’s participation in community care planning, delivery and evaluation.
At the seminar, we discussed ways in which governments across Europe are progressing their transition to a model of care that is person-centred, home and community-based. We learnt this is a complex process, where the economic argument is key not only to win people’s hearts but also their minds when they take decisions on how to design their care systems. We are indeed committed to continue providing evidence-based expertise and guidance to facilitate the transition. But it became clear that there is a compelling argument for prioritising community care, as seen through the lens of people with experience of care and many social services professionals who are leading community care and community-based social services across Europe.