“Beyond the walls: from the hospital to community services.Deinstitutionalization and international cooperation in Mental Health.”

Trieste, 13-16 April 2011

2Background Paper

1 Introduction. The psychiatric hospital as an issue which is inherent to traditional psychiatry. The psychiatric hospital (PH) represents psychiatry’s most dramatic contradiction. The social control which the PH exercises with respect to deviant behaviors which sometimes accompany psychiatric disorders, is often justified by reasons such as danger and risk, which orient legislation regarding psychiatric issues. Such laws, although sometimes recognizing formal individual rights, in substance confirm the prevailing model of coercive treatment which takes place in conditions of custody and thus of social exclusion. With the exception of a limited number of countries, the PH remains the prevailing model worldwide, in terms of the institutional organization of responses to the mental health problems of individuals. In Europe, despite more than 50 years of an anti-asylum movement and numerous laws, official policies and technical programs in various countries, more than 60% of psychiatric beds are still located in such institutions.

While member States maintain exclusive competency for the organization of healthcare and healthcare services, the EU Green Paper (2006) states that “The deinstitutionalization of psychiatric services and the creation of services which are based on the needs of patients and their families, in the local community healthcare systems and in general hospitals, can facilitate social inclusion’, while reconfirming that “large PHs can easily contribute to stigmatization”. The current transition is described as follows: “within the context of the reform of psychiatric services, many countries are moving away from therapeutic treatment in large psychiatric institutions (which in certain new member States still constitute a large percentage of the infrastructure for such services) and towards services at the local level”.

If social justice and equality appear as prerequisites for mental health, then we must recognize that an effort must be made to treat the right to care as a fundamental right

(which is the aim of the major WHO campaign Stop Exclusion – Dare to care, 2001) within the question of general rights. This document certainly presents the importance of rights and users’ rights: the right to have one’s own living space, regardless of the nature of one’s distress or disorder; the right to perform a productive and active role in society; the recognition of differences of gender, culture and ethnic origin.

These rights are generally denied by the PH as a total institution, due to its role within

the social organization as a place for the legalized exclusion of persons with psychiatric disorders from the social ‘fabric’.

“Beyond the walls: from the hospital to community services. Deinstitutionalization and international cooperation in Mental Health.” Trieste, 13-16 April 2011

3In addition to conditioning dramatically the rights and freedom of citizens, the access to care, the culture of a community and its institutions, especially in the area of healthcare, legal and social services, the presence of a PH generally hinders adequate investments in community services. It should also be stressed that maintaining a PH alongside community services, especially if there is no intention to downsize or suppress the PH, generally results in an increase in costs. Instead, the reconversion of costs for the PH, when suppressed, make it possible to invest in the community in terms of a comprehensive and sustainable system of welfare. The data regarding a number of experiences in Italy show that savings of up to 50% can derive from such a total reconversion into a network of community services and related instruments for social inclusion. As shown by a recent survey of WHO, 80% of government spending on mental health care are absorbed by psychiatric hospitals (Saxena et a., 2011).

While Point n. 7 of the Helsinki Action Plan (WHO, 2005) emphasizes that there is no

longer any space for large psychiatric institutions that exclude and isolate persons in a

state of suffering, or for anti-therapeutic or harmful interventions, the road to making

comprehensive psychiatric reform a reality still appears to be a very long one and calls for a new impulse from both governments and all stakeholders. In many countries the question of human rights in psychiatric institutions has assumed great importance, while the comparison of segregative, repressive and punitive psychiatric practices to torture, though prompting heated debates has also found considerable consensus.

4.2. Deinstitutionalization

2.1 Introduction

The process of the deinstitutionalization of PHs necessarily implies a major involvement on the part of both the general population and psychiatric operators. In fact, these latter do not necessarily have a decision-making role in cases involving a purely administrative deconstruction and the emptying of hospitals, which can only be activated by policymakers. By deinstitutionalization we mean that process which aims at the gradual transformation of living conditions, treatment and care and the restoration/construction of patient rights, together with the progressive substitution of

the rules of internment with procedures based on a full negotiability between patients and operators. This means: eliminating the dimension of the total control of the institution; moving beyond the culture of internment; strong proactive measures for social inclusion; comprehensive support to the person as such; gradual restoration of

full rights; initiatives for empowerment; involvement of the general population; the fight against stigma; and superseding mono-disciplinary and reductionist approaches, e.g. biological, psychological, etc. On the other hand, the process of deconstruction can be carried out even without modifying the paradigms of authoritarian psychiatry or psychiatry tout-court, by providing for de–hospitalization processes and the transfer of patients and/or the abandonment of significant quotas of inmates to a destiny of social drift. As is well known, the processes of ‘trans-institutionalization’ towards institutions which are not specifically intended for psychiatry or healthcare – such as hotels/residences, nursing homes and various types of social institutions – can take place in both a programmed or random fashion. Institutions of a psychiatric-forensic

nature, such as forensic hospitals, can also be charged with caring for persons who have committed minor crimes and have been abandoned and are living in conditions of social drift. Nonetheless, the process of deinstitutionalization can avail itself of deconstruction procedures, such as transferring groups of patients into situations that offer more opportunities for a positive evolution of the process, in a sensible way.

2.2. the context

The experiences of different countries with respect to PHs can vary widely in terms of

specific situations and tasks, while also often having remarkably similar connotations.

While by no means pretending to exhaust the range of different realities, one generally finds:

1. very large public PHs that serve macro or undefined populations.

a.1 with significant resources;

a.2 with minimal resources.

5b.public PHs intended for well-defined sectors of the population.

b.1 with significant resources;

b.2 with minimal resources.

1. private for-profit PHs
2. private non-profit PHs
3. PHs reserved exclusively for male or female patients.
4. PHs linked to significant community networks
5. PHs that basically represent the only resource for care and treatment in a given geographical area.

Hence, it is evident that ‘deinstitutionalization’ strategies imply procedures, tools and

methods that differ profoundly from one another, while major differences also obviously derive from the more general socio-economic situations within a given country. External collaboration may be provided directly by the local population or by state or local authorities who assume responsibility for the decentralization and/or transfer of patients, and/or the reorganization of the institution for the purpose of knitting, in very specific ways, the hospitalisation structures to a specific geographical area. When experiences among these different realities are compared, they frequently

highlight a mix of interventions for changing the living conditions of patients from within the institution, and for the transfer of groups of patients into other structures.

Such interventions are generally modified or diversified as the process of humanization/redimensioning of the institution progresses, and hand in hand with the

increased orientation towards the territory of origin and/or the overall downsizing of

the institution. These processes were implemented with the aid of a significant political will that joined forces with the operators who, notwithstanding their own commitment, were unable to conclude the transformation on their own.

The issue of PHs should be included within the more general area of deinstitutionalization in Europe, and the many different types of excluded populations

involved, e.g. institutions for children, the physically and mentally disabled, the elderly with chronic ailments, as well as social institutions that offer a refuge but in conditions of a lack of freedom and generally with a very low level of quality of care. All these institutions share the same characteristics of total institutions as PHs. They all consume resources while the groups and individuals they intern are progressively impoverished, and hinder processes of emancipation and social inclusion that are, instead, implemented via policies and technical actions that invest resources directly in the user.

2.3. levels of transformation

Today, we can gather indications based on successful experiences in phasing out PHs

which, some in a systematic fashion, others much less so depending on the country of

reference, have constructed pathways and processes and traversed the various levels in which interventions aimed at the transformation of psychiatric care must be carried out.

1. a) staff culture criticism of psychiatry’s custodial mandate and the re-elaboration of the mandate for control; abolishing practices of violence and restraint as a form of institutional management vs ‘no restraint’ at all levels; top-down vs bottom-up lead of change; contributions of new, diverse actors who are not part of ‘normal’ institutional life (e.g. volunteers, citizens, artists, intellectuals, family members, non-profit organizations).
2. b) relations with the user changing institutionalized behavior, responding to needs, listening and reconstructing life stories, restoring voices, instigating and sustaining empowerment, creating participation
3. c) the organization of life in the hospital

• ‘humanization’ (e.g. dignity of habitat; personalizing patient living spaces; private possessions, clothes, keys, wardrobes; managing own money,; contacts with outside world; first outings; finding life stories)
• ‘liberalization’ (e.g. opening up wards; mixed m/f wards; therapeutic community-type meetings; break up totalized life of patients; giving patients a voice; focus on primary needs such as income and housing; individual and group outings; parties; invite family members)
• deinstitutionalization (e.g. planning the phasing out and suppression of the PH through sectoralization and internal reorganization; closing wards and a gradual reconversion moving towards community services; transfer resources to services and directly to users, guaranteeing life in the community through economic resources for subsidies and training; opening the first group homes and single residences, with appropriate support; create social enterprises / coops, etc.)

1. d) interventions and deinstitutionalization policies

• involving and influencing administrations and policies, administrative management of transformation; involving civil society, creating public awareness and fighting stigma; contaminating the judicial and forensic psychiatric system; changing the

legal framework for Mental Health and inclusion;

• integrating Mental Health into general healthcare (e.g. at the community level / primary care and not just hospitalization for acute cases); integrating Mental Health with welfare systems (e.g. inter-sectorial link with social services for housing, work, free time, education and cultural training); reconverting or restoring psychiatric hospital sites to the community. This process must be linked to an awareness that creating a new paradigm is indispensable: this means a new way to conceive of the relationship with mental disorder, and a new way to organise social welfare-healthcare for the population that is more emancipatory in its content. The focus must be shifted from ‘illness and custodianship’ to ‘responding to the needs of persons’. It is essential to maintain a focus on gender in the processes and pathways of deinstitutionalization, taking into account the disparities in the expression of mental suffering in men and women, both in terms of the symptomatology as well as the therapeutic-rehabilitative aspects (Gender Disparities in MH, Report WHC 2010). In particular, for women interned in the PH, one must always take into account a possible history of sexual violence or abuse, both within and outside of the family. The decisive step in the process of phasing out PHs is identifying where to accept or admit new psychiatric cases. Generally, one opts for a mix between the use of specific wards (or beds) in general hospitals and hospitality in mental health centers or in other types of non-hospital residential structures, with preferably a very limited number of beds.

The suppression of the PH should coincide with the creation of networks of totally alternative services capable of providing care for a given population (as in sector policies), but which stress the recovery and re-inclusion of patients/inmates (as opposed to the sector model).

2.4 some considerations

Despite international recommendations, even those ofthe WHO (The Optimal Mix of

Services for Mental Health, 2011) which stress that PHs can be reduced or suppressed

only if community services and structures have already been established – and thus thanks to new funds specifically allocated for that purpose –we believe that a contemporaneous process of reconversion which can impact profoundly not only on the renewal of services but also on the community and its culture, is not only practicable but desirable. Despite the significant disparities due to national and local contexts, we believe that while this process can be instigated by a top-down impetus and be guided by a responsible institutional leadership, it can only be fully achieved thanks to a bottom-up process which mobilizes actors and resources. Learning from experience and not repeating the many errors committed even during the historical and decisive anti-institutional movement in Italy, is fundamental. This movement, which began with the pioneering experiences of the 60’s and 70’s and resulted in the psychiatric reform act of 1978, subsequently led to the healthcare goal plans of the 90’s and generated the political cloutnecessary to finally close all psychiatric hospitals and bring the Asylum Era definitively to an end in our country.

The ‘Italian way’ thus remains a model precisely because its community services and

good practices derive directly from the process of deinstitutionalization and the transformation that results, and not only in institutional terms (i.e. eliminating the  asylum) but also with respect to the philosophy of intervention, the values expressed, and the role and social significance of the services.

Some of the key lessons learned during the course of this experience are:

• working directly within total institutions but without deceiving ourselves that their

closure can come from outside or due to a ‘natural death’;

• creating alternative networks of coherent services that work in synergy within the

community, thereby avoiding useless and often harmful fragmentation and specializations, and thus working not according to preconceived models but by processes that are verified collectively by users, families and caregivers, and the community and its institutions;

• avoiding priority implementation of hospital services for crisis/emergencies instead of community structures. This is what occurred initially with the application of the Italian Psychiatric Reform Act, but we can find the same process with variations in many other countries, where it appears as the proposed solution in a logic of the apparent integration of psychiatry with healthcare systems. Instead, this logic has reconfirmed the reductionist medical model and failed to meet the need for a comprehensive approach to the needs of persons with mental disorders, especially if it is preponderant or detached from effective community services networks;
• assign to the community services the task of taking responsibility for persons who come from their territory of competence, who are still interned in the PH;
• plan the phasing out of PHs at the local, regional and state levels, with specific time-frames and the possibility of applying administrative sanctions in cases of non-compliance.

A decisive and indispensable pre-condition is that the renewal of welfare systems be closely linked to these changes. The Green Book stresses the need to focus on the more vulnerable social groups. As the situation in Italy proves, it is not enough to create a patchwork and separate welfare system out ofthe budgets for the asylums

that are being closed, with the risk of creating new circuits of marginalization and merely subsidizing poverty and deprivation. Instead, the focus must be on full citizenship in terms of social rights for the weak and vulnerable persons who leave total institutions and who, due to psychiatric disability or the lack of social opportunities and equal access, are condemned to wander on the edges of Europe and the margins of productive processes.

The deinstitutionalization process is not only downsizing or even suppressing psychiatric hospitals, but undertaking a complex process of removing the ideology and power of the institution by putting the person over the institution with their subjectivity, needs, life story, significant relationships, social networks, social capital.

In order to do that, it is necessary to shift the power in order to empower people

with mental health problems, shift resources from hospitals to a range of community

based services useful for his/her whole life. It opens pathways of care and programs

that integrate social and health responses and actions.

This complex process of change involves users, carers, professionals and the general citizenry, and extends to the legislative and political level. It is thus a process for the reconversion of human and economic resources;

operational changes and the care offer; culture, knowledge and the institutional mission. This latter means no longer managing processes for exclusion through the segregation of persons, but placing the individual at the centre of the system, with their human and social rights, and their needs, in a perspective which is based on the person’s ‘whole life’ and on recovery from the experience of a mental disorder.

Deinstitutionalization processes and innovative programs and services ultimately, and to the extent possible, should lead to an effective transfer of power into the hands of the direct beneficiaries, and within a system oriented towards giving value to their experiences, reappropriating health and well-being, controlling the quality of the care provided and participating actively in that care. Based on what we have described above, the transformation process takes place at the following multiple levels:

• movements
• political
• legislation
• service models and practices
• networks and organized actors, autonomously or through the institutions, and community development, as a general raising of awareness regarding these issues, and the activation of non-technical resources and initiatives.

The mutual support among networks of innovators, the dissemination of effective and

sustainable practices, in synergy with user self-representation movements, will be an effective strategy for bringing about change in areas in Europe and for supporting the indispensable legal and policy reforms that are required to develop community based

mental health services. The type of international cooperation can be inspired by Trieste and other examples of excellent practice as demonstrated by this conference that have the potential to support pilot experiences by means of (Trieste WHO CC work plan):

1)Support and guidance in various countries for deinstitutionalization and development of integrated/comprehensive Community Mental Health services by:

-drafting of policies at the local and national level

-strengthening leadership and management (e.g through the exchange of operators, on-site and off-site training, courses and stages)

-supporting implementation and development of local services network

-supporting workforce development (multidisciplinary teams)

2)Collaboration, partnership and networking with some countries/areas which demonstrate the willingness and capacity to deliver community based service development

3)Diffusion of Whole Systems & Recovery approaches: innovative practices in community MH (e.g. alternatives for acute care; comprehensive CMH Centers; rehabilitation, recovery & social inclusion services; deinstitutionalization & whole

systems change; early intervention integrated network; social enterprises & Cooperatives technology, operation & policies)

The participants and supporters of the Trieste meeting “Beyond the walls – the passage from the hospital to community services”, 13-16 April 2011, commit themselves to collaborating with and supporting one another in the process of phasing out mental hospitals and in the implementation of community services, thereby adhering to the letter of the principles of the Helsinki declarationand its plan of action. This collaboration shall be based on activities that are:

• Driven by the needs and experiences of people, communities and society;
• Based on best evidence, both scientific and local evaluations;
• Sensitive to local cultures and resources, respecting diversity.

Trieste will establish a European service development unit within its collaborating centre. Dedicated staff will be responsible for the planning and coordination of activities in close partnership with WHO Europe. Staff will work closely together with the specialist staff in Copenhagen on the following activities: Beyond the walls: from the hospital to community services.

1.Identify and invite other centers of excellence, representative groups incl. NGOs and experts to become members of the network already constituted during the course of the meeting. Members will be expected to assist with the design and delivery of action points.

2.Produce a publication such as recommendations and guidelines for phasing out psychiatric hospitals specifying the elements of good community based practice.

This will be in accordance with the forthcoming WHO European Mental Health Strategy, the Helsinki mental health declaration, the Mental Health Report 2001 and WHO modules. The publication will be a partnership between WHO Europe and WHO HQ and the Trieste LCC and shall be based on consultations with the actors/leaders of the best experiences in this area.

3.Prepare a curriculum and plan a Summer School for Community care in Trieste.

This will be a technical course of 1-2 weeks, offering planners and practitioners the competencies to implement and run community based mental health services.

It will be open to candidates from around the world, but priority will be given to participants from countries WHO and Trieste are supporting. WHO will be consulted on the curriculum.

4.Seminars and conferences will take place with the aim to a) progress an integrated model of promotion, prevention, care and recovery and

b). disseminate knowledge to places aiming to develop community based care. These occur in various places to demonstrate the richness of experiences.

5. Instigate pilot services in towns, areas, regions and countries that can function as model sites, and dissemination of experiences and generalization of models of care will be encouraged.

6.Support member states and regions across Europe to implement and deliver community based services. Dedicated experts will be identified who can offer continuity over time to assist as requested with policy and strategy, implementation and monitoring to achieve quality and sustainability of services.