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Deinstitutionalisation

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Introduction
Publications
Research and Practice
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Introduction

Deinstitutionalisation (or deinstitutionalization) is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. Deinstitutionalisation works in two ways: the first focuses on reducing the population size of mental institutions by releasing patients, shortening stays, and reducing both admissions and readmission rates; the second focuses on reforming mental hospitals' institutional processes so as to reduce or eliminate reinforcement of dependency, hopelessness, learned helplessness, and other maladaptive behaviours. 

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Publications (date ordered)

The European Mental Health Action Plan World Health Organisation, 2013 Mental disorders are one of the top public health challenges in the WHO European Region, as measured by prevalence, burden of disease and disability, affecting more than a third of the population every year. In all countries, most mental disorders are much more prevalent among those who are most deprived. The WHO European Region therefore faces diverse challenges affecting both the (mental) well-being of the population and the provision of care for people with mental health problems. Systemic and coherent actions are needed to address these challenges. The European Mental Health Action Plan focuses on seven interlinked objectives and proposes effective and integrated actions to strengthen mental health and well-being in the European Region. Investing in mental health is essential for the sustainability of health and social policies in the European Region. This document contains a draft European Mental Health Action Plan that corresponds to the four priority areas of the new European policy framework for health and well-being, Health 2020, and will contribute directly to its implementation. The Action Plan has been developed in close consultation with Member States, guided by the Standing Committee of the WHO Regional Committee for Europe. The Regional Director for Europe and the Regional Office wish to thank all Member States and others who have contributed to developing this Action Plan.

Deinstitutionalisation – A Human Rights Priority for Children with Disabilities Georgette Mulheir, The Equal Rights Review, Vol. Nine (2012) The United Nations Convention on the Rights of the Child (CRC) clearly outlines a range of children’s rights that, taken together, suggest that most children should live with and be cared for by their birth families (articles 9 and 7). It is the primary responsibility of parents to raise their children and it is the responsibility of the state to support parents in order that they can fulfil that responsibility (article 18). Children have the right to protection from harm and abuse (article 19), to an education (article 28) and to adequate healthcare (article 24). But they simultaneously have the right to be raised by their family. Where their family cannot provide the care they need, despite the provision of adequate support by the State, the child has the right to substitute family care (article 20). Despite this, across the European region, it is likely that between 600,000 and 1,000,000 children are separated from their families and live in large residential institutions that cannot meet their needs.2 There is a shortage of accurate statistics, but existing research suggests that children with disabilities are significantly over-represented in these institutions. 3 Research also demonstrates that the institutionalisation of children harms their health, development and future life chances. It should be noted that the intentions behind this institutionalisation are usually good. Children with disabilities are often institutionalised as a way of providing “specialised” care. They are either considered to be ill, therefore requiring constant medical care in long-stay hospitals, or are assessed with special education needs, which are provided for in centralised, residential special schools, often sited at a considerable distance from the family home. The logical intention of these institutions is to provide care and services to children. However, this results in the arbitrary separation of children with disabilities from their families and communities, and their isolation from society. This article sets out some of the evidence of the impact of institutionalisation on children in Europe. It explores the human rights legislative and policy framework underpinning institutionalisation and outlines areas that require development. It assesses some of the most recent advances in policy and action to address the issue and makes recommendations for transforming systems of health, education and social protection services for children and families, in order to end the institutionalisation of children. In addition to published academic research, the article draws on the results of Lumos’ research into placements of children in residential institutions in a number of countries. 

Shifting care from hospital to the community in Europe: Economic challenges and opportunities Helena Medeiros, David McDaid, Martin Knapp and the MHEEN Group, Personal Social Services Research Unit, London School of Economics and Political Science 2007  Although it has been half a century since the first efforts to reduce the numbers of people with mental health problems living in long-stay hospitals and other institutions, only limited research has been undertaken on progress in this area in many parts of Europe. Comparative analysis is especially difficult, as countries vary greatly in their economic and political systems as well as in the structure of their health and welfare services. Countries in the MHEEN Network have varied experiences and challenges ahead as they continue to shift care from hospitals to the community. There is a growing consensus around the desirability of community care arrangements that aim to deliver treatments and support services tailored as far as possible to individuals’ needs. Deinstitutionalisation is of course much more than moving people from one place to another. To be successful, it requires good community placements to be available, staffed by skilled and motivated people and located in welcoming communities. It should be seen as an ongoing process and, although many countries have undertaken very positive steps, their efforts need to be sustained and increased. Many countries still need to make considerable investments in the necessary physical and human resources. Countries need to insure that mental health services are provided through primary care facilities, with appropriate secondary systems, consisting of specialist consultant services, and inpatient specialist care when needed, and that community care is seen as encompassing social care support, access to good housing, educational provision where needed, and – as far as possible – opportunities for people to obtain paid work so as to reduce the risks of poverty and social exclusion. As the new Member States in Central and Eastern Europe continue moving towards deinstitutionalisation, they must be aware of the risks of closing beds before adequate community provision is developed.There is a pervasive concern that bed reductions too often precede the development of comprehensive community-based services, leaving both hospitals and community services under-resourced. As we know, closing an institution is easy; the challenge is to create good systems of community care.

Position Paper on Deinstitutionalization from the Novia Scotia Residential Agencies Association, 2007 The transition from institution to community provided ample opportunity to witness the profoundly negative impact of large congregate living. It erodes the human spirit, diminishes well-being and self-worth, and decreases people’s value in the wider community. NSRAA recognizes the need to guard against replicating institutional practices in smaller community settings. 

Deinstitutionalisation and community living – outcomes and costs: report of a European Study Jim Mansell, Martin Knapp, Julie Beadle-Brown and Jeni Beecham Canterbury: Tizard Centre, University of Kent, 2007 The overall aim of the 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.

Learning From History: Deinstitutionalization of People with Mental Illness As Precursor to Long- Term Care Reform, Chris Koyanagi, Judge David L. Bazelon Center for Mental Health Law/Kaiser Commission on Medicaid and the Uninsured, 2007 (USA)  The history of deinstitutionalization falls in the USA into several stages as policies and objectives have changed over time. The early focus was on moving individuals out of state public mental hospitals and from 1955 to 1980, the resident population in those facilities fell from 559,000 to 154,000. Only later was there a focus on improving and expanding the range of services and supports for those now in the community, in recognition that medical treatment was insufficient to ensure community tenure. In the 1990’s whole institutions began to close in significant numbers and there was a greater emphasis on rights that secured community integration – such as access to housing and jobs.

Children in Institutions: The Beginning of the End? The cases of Italy, Spain, Argentina, Chile and Uruguay UNESCO, 2003 Towards the end of the 1990s, UNICEF Innocenti Research Centre (IRC) publications began looking at various aspects of ‘alternative care’, ranging from provision for unaccompanied children in post-genocide Rwanda1 to children in public care in the transition countries of Central and Eastern Europe2 and the protection of children’s rights in intercountry adoption.3 In now addressing deinstitutionalization, this Innocenti Insight focuses on an issue that has been of growing concern to UNICEF in recent years: the situation of children without their primary caregivers. The level of concern is at present such that this topic figures as one of the six priority areas for child protection in UNICEF’s Medium Term Strategy Plan for 2002-2005. Some children are placed in institutions precisely because their primary caregivers – in most cases parents – have died, have relinquished or abandoned them, or have had their responsibility for them withdrawn. Most are there, however, for other reasons, such as the need for special care, the temporary inability of parents to cope, instances of domestic violence or neglect, or loss of contact with parents and family in armed conflict or other emergency situations. Ironically, it is often simply through the very fact of their placement that the role and presence of these children’s ‘primary caregivers’ may be jeopardised or, at worst, definitively terminated. 

Psychiatric Reform in Italy Dr. Giovanna Del Giudice, Mental Health Department, Trieste 1998 The process for the reform of public psychiatric assistance which has taken place in Italy over the last 30 years has resulted in the transition from an asylum psychiatry based on exclusion and internment to a community mental health work-style based on inclusion and the restoration and construction of rights for persons affected with mental disorders. The transition from the psychiatric law of 1904 - which defined the mentally ill person as “a danger to himself and others” and “a public scandal” and which organised the institution of the asylum around this danger in order to treat/contain it – to the reform law, Law 180 in 1978, which sanctioned for the person affected with mental illness the right to voluntary care in the community, not only marks a legal but a conceptual-practical transition as well. And it does so by denying the equivalence mental illness-social danger, giving the mentally ill person access to social citizenship and prohibiting the construction of new psychiatric hospitals. The Italian experience can be seen as a theoretical-practical process of deinstitutionalisation which begins with the asylum in order to move on to the deconstruction of psychiatry and illness.

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Research and Practice

Italy led the way in deinstitutionalisation, but regional disparities remain a concern OECD, 2013 Italy has made, years ago, a decisive shift towards a community-based model for mental health care, but regional disparities in services remain a challenge, according to the new OECD report Making Mental Health Count. 

DEINSTITUTIONALIZATION IN EUROPE: TWO RECENT EXAMPLES FROM GERMANY AND HUNGARY Gusztáv Stubnya, Zoltán Nagy, Claas-Hinrich Lammers, Zoltán Rihmer & István Bitter, Psychiatria Danubina, 2010; Vol. 22, No. 3, pp 406–412 Deinstitutionalization has made possible the development of modern community psychiatric services, however radical decrease in the number of hospital beds may result in a reduction in the overall standard of psychiatric care and disruptions in service delivery. The authors present an example of deinstitutionalisation in Hungary, which led to serious difficulties in the provision of healthcare in the field of psychiatry, contrasted with a case from Germany serving as an example of an alternative solution. 

Reflections on Deinstitutionalization in the United Kingdom Alexandra Hamlin and Peter Oakes, Journal of Policy and Practice in Intellectual Disabilities Volume 5 Number 1 pp 47–55 March 2008  Deinstitutionalization has been the hallmark of public policy for people with intellectual disabilities within many countries in the developed world for the past 40 years. Although within Britain deinstitutionalization is set to be completed by the end of 2008, beyond the simple closure of hospitals, the success of this initiative can at best be seen as uncertain. Although huge structural change has been achieved, the initiative’s outcomes in terms of reduced distress, mainstreamed services, and enriched networks of relation- ships, require further examination. In order to reinstate the possibility of transformation in the lives of people with intellectual disabilities, it is necessary to return to an analysis of the relationship between people with intellectual disabilities, their supporters, formal services, and the community as a whole. One way of reflecting on these relationships is through an examination of the discourses that characterize them. The authors reflect on the themes of protection, power and humanity, and the manner in which these have survived the physical closure of long-term care hospitals. The continuation of deinstitutionalization is understood as requiring consideration of the institution in terms of the discourses that were prevalent within it. The transformation of services now depends on changes within these discourses and change now needs to be focused on relationships that challenge institutional discourses.

Institutionalization of deinstitutionalization: a cross-national analysis of mental health system reform Gordon C Shen and Lonnie R Snowden, International Journal of Mental Health Systems 2014, 8:47  Background: Policies generate accountability in that they offer a standard against which government performance can be assessed. A central question of this study is whether ideological imprint left by policy is realized in the time following its adoption. National mental health policy expressly promotes the notion of deinstitutionalization, which mandates that individuals be cared for in the community rather than in institutional environments. Methods: We investigate whether mental health policy adoption induced a transformation in the structure of mental health systems, namely psychiatric beds, using panel data on 193 countries between 2001 and 2011. Results: Our striking regression results demonstrate that late-adopters of mental health policy are more likely to reduce psychiatric beds in mental hospitals and other biomedical settings than innovators, whereas they are less likely than non-adopters to reduce psychiatric beds in general hospitals. Conclusions: It can be inferred late adopters are motivated to implement deinstitutionalization for technical efficiency rather than social legitimacy reasons.

Mental Health development in Brazil: From institutionalization to deinstitutionalization

Making the most of community links from a secure psychiatric setting

Deinstitutionalization in the UK and Ireland: Outcomes for service users Eric Emerson & Chris Hatton, Journal of Intellectual and Developmental Disability, Volume 21, Issue 1, 1996, pages 17-37 The UK research literature on the effects of deinstitutionalization, published between 1980 and 1994, was reviewed. The results from 71 publications arising from 46 studies indicated that smaller, community-based residential services were generally, though not inevitably, associated with: (1) increased user engagement in ongoing activities; (2) increased contact from care staff; (3) increased use of community facilities; (4) increases in adaptive behaviours; (5) reductions in observed challenging behaviour; (6) increased opportunities for choice; (7) increased contact with family and friends; (8) a better material standard of living; and (9) increased acceptance by the community. No differences were found with regard to reported challenging behaviour. In addition to these differences between institutions and community-based residential services, there were also large differences in service quality within community-based residential services, with some community-based services providing a quality of life similar to institutions. The limitations and implications of the evidence are discussed.

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Videos and Presentations

Creativity and Innovation in Mental Health: Reflections on the development of de-institutional Practice, Presentation by John Jenkins, President of the IMHCN, given at the Capacity-building seminar for MHE and ENUSP members, Brussels, 20 May 2011. 

From the Asylum to territorial Services for Mental Health Innovation for Development and South-South Cooperation Presentation by Peppe dell’Acqua, 2010

From Madhouse To Our House Pt.1and Pt 2, 2010. The Consumer/Survivor Initiatives (CSI) model transforms the way people with mental health concerns are supported. The video includes historical background on how society has responded to people with mental health problems, how treatments have changed and the impact of deinstitutionalization. The development of CSI in Ontario is reviewed showing the results of the research project on CSI that was conducted in late 1990s and first half of 2000. Like the research, the video draws heavily on the experiences of consumer/survivors and social-service providers.

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Organisations

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Links

Deinstitutionalisation From Wikipedia 

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