Deinstitutionalisation and Community Living: Outcomes and Costs
A European Study.
This project aimed to bring together the available information on the number of disabled people living in residential institutions in 28 European countries, and to identify successful strategies for replacing institutions with community-based services, paying particular attention to economic issues in the transition. It is the most wide-ranging study of its kind ever undertaken.
Increasingly the goal of services for people with disabilities is seen not as the provision of a particular type of building or programme, but as the provision of a flexible range of help and resources which can be assembled and adjusted as needed to enable all people with disabilities to live their lives in the way that they want but with the support and protection that they need. This is characterised by several features:
- Separation of buildings and support The organisation of support and assistance for people is not determined by the type of building they live in, but rather by the needs of the individual and what they need to live where and how they choose. High levels of support can be provided in ordinary housing in the community, for example.
- Access to the same options as everyone else Instead of, for example, determining that all disabled people must live in group homes, policy is framed around people having access to the same range of options as everyone else with regard to where they live and receiving the support they need wherever they may choose.
- Choice and control for the disabled person and their representatives Help is organised on the principle that the disabled person should have as much control as possible over the kind of services they receive, how they are organised and delivered, to fit in with the person’s own aspirations and preferences. This means supporting people’s decision-making to achieve the best balance between their wishes and society’s responsibility for their care.
This approach is sometimes referred to as ‘supported living’ or ‘independent living’. These services support people to live as full citizens rather than expecting people to fit into standardised models and structures.
Supporting disabled people to live in the community as equal citizens is an issue of human rights. The segregation of disabled people in institutions is a human rights violation in itself. Furthermore, research has shown that institutional care is often of an unacceptably poor quality and represents serious breaches of internationally accepted human rights standards. Evidence from research and evaluation of alternatives to institutional care also supports the transition to services in the community. Where institutions have been replaced by community-based services, the results have generally been favourable. However, experience shows that moving to community-based services is not a guarantee of better outcomes: it is possible to inadvertently transplant or recreate institutional care practices in new services. Developing appropriate services in the community is a necessary, but not a sufficient, condition for better results.
The overall aim of this project was to provide scientific evidence to inform and stimulate policy development in the reallocation of financial resources to best meet the needs of people with disabilities, through a transition from large institutions to a system of community-based services and independent living.
The objectives of the project were to:
- Collect, analyse and interpret existing statistical and other quantitative data on the number of people with disabilities placed in large residential institutions in 28 European countries.
- Analyse the economic, financial and organisational arrangements necessary for an optimal transition from a system of large institutions to one based on community services and independent living, using three countries (England, Germany and Italy) as case studies to illustrate the issues involved.
- Report on the issues identified, addressing the results of the project, the adequacy of the data available in each country, and making recommendations for the cost-effective transition from institutions to community-based services.
The results of the project have been published in two main volumes:
Further information is available at http://www.kent.ac.uk/tizard/research/DECL_network/Project_reports.html
The project was coordinated by the Tizard Centre of the University of Kent and involved the following persons and organisations:
- PSICOST, Spain: Prof L Salvador-Carulla, Rafael Martinez-Leal, M Poole, J A Salinas and A Romero
- University of Siegen, Germany: Dr J Schädler, Dr A Rohrman and A Frindt
- Charles University, Prague Prof J Siska, B Vann, J Vránová
- Leuven University, Belgium: Prof C van Audenhove, M Demaerschalk, A Declercq
- University of Kent, UK: R Hayward, A Kozma
- London School of Economics, UK: D McDaid, J-L Fernandez, T Matosevic, A Lewis, A Mehta, F Moscone, R Romeo, F Amaddeo, G Fattore, A Franci, G de Girolamo, C Gori, T Kallert, H Kunze, P Morosini, M Percudani, R Tarricone, G Tibaldi, R Touchet, B Trukeschitz, H Ward, I Zechmeister
- European Association of Service Providers for Persons with Disabilities, Brussels: L Zelderloo, H de Keyser
- Inclusion Europe, Brussels: I Körner, G Freyhoff
- Mental Health Europe, Brussels: J Henderson
- Autism Europe, Brussels: D Vivanti
- European Disability Forum, Brussels: C Besozzi
- Open Society Institute Mental Health Initiative, Budapest: C Parker