The move from institutional to community care must be firmly anchored in social work values and in human rights. Without this legal and ethical backbone, the transition may be reduced to cost-cutting exercise where the weight of care in shifted from the state to family and produce negative outcomes for users.

"Institutions are like prisons. The only difference is that prisoners at least have a fair trial whereas service users are simply locked away without this privilege" – Yannis Vardakastanis (President of European Disability Forum) opened up the discussion on community-based care. He briefly presented the UN Convention of the Rights of People with Disabilities as “an opportunity for users and service providers – public and private – to work together and bring about change… It is an empowerment of people, giving them their rights. This would never happen within an institution.”

Vardakastanis asserted that the times of financial crisis offer opportunities to review our systems and change them dramatically. He called on public and private sector, trade unions, disability movements and courts to protect people with disabilities from isolation and segregation and to help them exercise their right of choice. He concluded: “Freedom of choice is the holiest right. If a person is not able to exercise this right, (s)he is in captivity. It is a form of social slavery. Freedom of choice means independence.”

Professor Martin Knapp (LSE) explained that economists are not interested in the cost but in the cost-effectiveness and outcomes resulting in the improvement of people’s wellbeing. Using his recent research conducted for the Department of Health in the UK, he demonstrated the cost-effectiveness of selected interventions, showing that prevention pays off in the medium and long-term (up to £15 return on every £1 spent). Good community care is not cheap, Knapp warned, but it is not necessarily more expensive than institutional care, and undeniably offers a better quality of life.

Prof. Knapp urged the audience to think cost-effectiveness, not just cost when shifting from institutions to community care. The process, he said, had to be assessed in the long-term and seen as broadly as possible, since  savings might fall across many different budgets.

“Deinstitutionalisation is most successful if located within other policy efforts such as personalisation, self-direction, carer support, anti-stigma efforts, access to employment, social participation, integrated care and others,” Knapp advised.

Following Martin Knapp’s holistic approach, Maria Nadazdyova presented the new Slovak strategy on deinstitutionalisation. She admitted that up until recent elections the issue has not been on the political radar, and the previous government invested €200 million  on refurbishing old institutions. The new government has made a commitment to change the nature of services in Slovakia, where 88.5% of care is delivered in institutions. The new strategy and action plan foresee the gradual closure of seven institutions (including two for children) selected competitively on the basis of the best deinstitutionalisation action plan. The frontline staff and management of these institutions will be supported financially (government and EU funds) as well as through intensive training, retraining, supervision and counselling.

The new shift in policy has undoubtedly been influenced by the work of the European Deinstitutionalisation Expert Group, said Nadazdyova, and applauded Jan Pffeifer’s commitment to the cause. She noted that the institutional lobby is still strong and the general need for community-based services is being misinterpreted as the need for institutional services.

Bruno Forti (director of mental health services, Belluno municipality, Veneto Region, Italy) recalled that Italy was the first developed country to base its mental health care solely on community centres. This early start was not without difficulties, Forti admitted, as there was no money for the transitional period when institutional and community services functioned in parallel. It took some 20 years to work out operational models for community-based services as well as standards for service provision, recruitment and training of staff, Forti admitted.

Forti said that integration is the key: both in terms of 1) integration of services, creating a seamless network of care and support to vulnerable people and 2) the integration as social inclusion. Without the latter, he stressed, the services may be physically in the community but not a part of it.

 

In the closing discussion, panellists agreed that “…people with long-term needs don’t necessarily fit into clear-cut boxes of social care and services” (Knapp) and “cannot be at the mercy of society, politics and the environment” (Vardakastanis). They were candid in admitting that “deinstitutionalisation is a difficult concept because it is about looking back and leaving behind something that you don’t want and doesn’t define what you want for the future” (Nadazdyova) and Forti finally reminded delegates that “the centre of the intervention is not an institution or structure but an individual and his/her community.” 

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