Developing Community Care

Have the long-stay institutions for people with disabilities in the ‘old’ EU Member States long since been replaced by community-based services? And if not, how many Europeans still reside in such institutions? These two pertinent questions shaped discussions at the recent European Association of Service Providers for Person’s with Disability (EASPD) seminar, held in Brussels between 3-4 October 2011.

Opening the seminar Jan Jarab, Regional Representative of the UN High Commissioner for Human Rights Office spoke about the heterogeneity of Western Europe and about the ‘golden cage paradox’, implying that existing institutions were considered to be too comfortable and well-established to be closed.

Jim Conroy from the US-based Centre for Outcomes Analysis argued that a growing public awareness of scandalously poor conditions in institutions combined with effective litigation closed many ‘front doors’ to these services in the US. He discussed numerous misconceptions and myths surrounding community care and urged European colleagues not to repeat mistakes that his country made in the past 40 years, but rather to learn from them.

More quantitative and qualitative information about the institutional landscape in Western Europe came from the eight national presentations (Austria, Belgium, Finland, France, Germany, Ireland, Netherlands and UK ) which provided these figures:

In Ireland in spite of the advances made in moving people from institutional to community‐based settings, over 4,000 adults with disabilities continue to reside and live out their lives in large ‘congregated’ settings.

In Finland over 2,000 people with intellectual disabilities remain in large institutions, which can house up to 400 people.

In France people with long-term needs face the possibility of being relocated to Belgium, rather than being receiving cared in their own locality. This phenomenon is not only limited to the northern regions, bordering Belgium, but also affects French citizens from Martinique and Guadeloupe. Although firm figures are not available, estimates of the French citizens currently receive care in institutions in Belgium vary from 4,000 to 15,000.

In Flanders some 16,000 adults and children receive care in institutions compared to 10,000 who are in a community setting and at home. A further 10,000 remain on waiting lists for residential or home care. The Flemish government firmly believes that not all residential services display the four characteristics of institutional culture and is concerned about the capacity of local communities to absorb users from congregated settings.

In Germany article 13 of the Social Code Book argues for placing people in institutions “if costs for supported living services are higher than institutional care and institutional care is acceptable, support can only be provided in an institution”. It is also believed that a provider-controlled application procedure together with ‘distant and disinterested’ local authorities create a favourable incentive for continuation of the institutional model.

On Day 2, key European Networks presented their views. John Halloran, CEO of European Social Network, accepted that local government is part of the problem, but also part of the solution. Mr Halloran emphasised the importance of leadership and of a values-based approach to deinstitutionalisation and community care development. “The move from institutional to community care must be promoted across Europe, anchored in social care values and human rights”, he concluded.

Closing the event Jan Pfeiffer, Chair of the European Deinstitutionalisation Expert Group, warned that “poverty cannot be managed by the means of institutionalisation” and stated that “front doors to institutions should be firmly shut now; we need to focus on developing person-centred, individualised care packages, in line with the UN Conventions on the Rights of Persons with Disabilities”.