"Conceptions and Definitions as used by the European Coalition for Community Living (ECCL)"
Tuesday, 01 December 2009 Last Updated ( Wednesday, 02 December 2009 )
Institution
There are various approaches to defining an institution. Some definitions are based on the number of places in a facility, e.g. an institution is a facility with 30 or more places. This definition can be useful when it comes to collecting data, describing trends and monitoring progress in deinstitutionalisation. However, an institution is not defined only by its size.
Size – particularly large size – is just an indicator of something more fundamental that makes a service ‘institutional'.
A better way to define an institution is to say that: An institution is any place in which people who have been labelled as having a disability are isolated, segregated and/or compelled to live together. An institution is also any place in which people do not have, or are not allowed to exercise control over their lives and their day-to-day decisions.
The institutional model is seen as inadequate in many countries and institutions are replaced with support services in the community. In these countries it is recognised that no matter how much money is spent on institutions, and how good and committed staff are, the characteristics of institutional care make it extremely difficult or impossible to provide a good quality of life for people with disabilities (which is also the meaning of Article 19 of the UN Convention on the Rights of Persons with Disabilities).
Community Living
The term ‘community living' refers to people with disabilities being able to live in their communities as equal citizens, with the support that they need to participate in every-day life, such as living in their own homes with their families, going to work, going to school and taking part in community activities. It also means having choices and living with dignity. To support individuals to live an ordinary life they need access to mainstream opportunities and services available to the general population, and also to tailored individual support.
Deinstitutionalisation
Deinstitutionalisation is the “replacement of institutions by services in the community” It is about bringing people out of institutions and helping them to live in the community by creating the necessary supports. Deinstitutionalisation is also about recognising the variety of needs of people with disabilities and supporting them to live an ordinary life in the community.
Deinstitutionalisation does not end with the closure of institutions. There is a long way to go to ensure high-quality, individualised support for people with disabilities to live an ordinary life in the community. It is important to ensure that institutional practices are not replicated in the community.
Common Misconceptions About Independent and Community Living
MYTH Independent living is only for people with mild or moderate disabilities who can live by themselves. Some people are too disabled to live independently in the community.
FACT Independent living is not the same as living independently. It does not mean that one has to do everything alone. Independent living means having the support one needs and when one needs it. Independent Living is about people having control and choice over the decisions they make about key issues in their lives. Independent living is for everyone.
MYTH It is enough to re-provide services in the community (for example to close an institution and move people to live in ordinary houses in ordinary streets) to ensure high quality community based services.
FACT The location is not everything. Living in a small home in the community is not necessarily community living. Community services can also become institutional if they have rigid routines and are not based on the needs and aspirations of the people using the services.
MYTH People with disabilities like to live in institutions together with many other people with disabilities. This is also safer because people should be protected from the risks of living in the community.
FACT Many people have had to live their whole life in institutions, without any opportunity to make choices and they do not know about life in the community. They should be given the opportunity to experience community living and have a choice over where and with whom they live. Research has consistently shown the institutions offer poorer quality of life for people with disabilities.
MYTH People with severe and profound disabilities are unable to make choices.
FACT Everybody is able to make choices with the right support. People with severe and profound disabilities are able to express preferences. The people around them need the right skills and knowledge of the individual to understand the person's wishes and feelings. However, many people who lived in institutions were never allowed to make choices, they do not know what other options exist. Until people have had the opportunity to experience these alternatives, they cannot make real choices.
MYTH Independent/Community living is very expensive, only rich countries can afford it.
FACT The cost of support varies country by country. In general, the amount of support in community can be tailored to the needs of the individual. This means that for some people community living is cheaper than institutional provision, while for others it is more costly. Community living provides a better life for people with disabilities and it is better value for money.
MYTH Community living works well in some countries but might not work in other countries with different traditions, culture and administrative systems.
FACT Community living has been successfully implemented in many countries with very different traditions and administrative systems. It is not bound to any specific welfare state model. There are local variations (for example who provides support, how provision is financed etc.) but the basic principles are the same everywhere.