deinstitutionalization processes in international and local context roberto mezzina, director mh...

DEINSTITUTIONALIZATION PROCESSES IN INTERNATIONAL AND LOCAL CONTEXT Roberto Mezzina, Director MH Dept. / WHO CC for Research and Training AAS 1, Trieste Kotor 24 March 2015

Italy 100.000 inpatients in 1971 in PHs 48.000 inpatients in 1978 All PHs closed in 2000 1978 reform law: -no Phs admission, no new PHs -community based care -human rights focus / involuntary treatment duration reduced (1 week +) 2 pych. to mayor -No police / justice involved just health protection

Mental Health Departments They are rooted in areas of about 300.000 inhabitants and encompasses a number of components: -Small general hospital acute units (15 beds), 1/10.000 -Community Mental Health Centers (up to 12hr, sometimes 24hr) 1/80.000 -Group-homes 2/10.000 with a wide range of support up to 24hr (17.000 beds in Italy, mostly NGOs) -Day Centre (also with NGOs)

Policy documents supporting D.I. EU Union Green paper (2006) on social inclusion European Pact for MH and Wellbeing, 2008 Combating stigma and social exclusion Develop mental health services which are well integrated in the society, put the individual at the centre and operate in a way which avoids stigmatisation and exclusion WHO, 2009 Psychiatric hospitals (PHs) have a history of serious human rights violations, poor clinical outcomes, and inadequate rehabilitation programmes. They also are costly and consume a disproportionate proportion of mental health expenditures. WHO recommends that psychiatric hospitals be closed and replaced by services in general hospitals, community mental health services, and services integrated into primary health care

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). 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.

INEFFICIENT USE OF RESOURCES: High concentration of resources in mental hospitals

INEFFICIENCY: MENTAL HEALTH BUDGET, STAFF WORKING AND USERS TREATED IN MENTAL HOSPITALS BY INCOME (median rate per 100,000 population)

Overview of the Mental Health Action Plan 2013 -2020 Vision A world in which mental health is valued, promoted, and protected, mental disorders are prevented and persons affected by these disorders are able to exercise the full range of human rights and to access high-quality, culturally appropriate health and social care in a timely way to promote recovery, all in order to attain the highest possible level of health and participate fully in society and at work free from stigmatization and discrimination.

WHO QualityRights Improving quality and human rights in facilities and promoting a civil society movement Assessment of facilities Development of a change plan Capacity building on human rights issues

State of mental health in the European Region Mental disorders affect more than a third of the population every year, the most common of these being depression and anxiety. Depressive disorder is twice as common in women as in men. People with severe mental health problems, such as schizophrenia, bipolar disorder or severe depression, have a 20- 30 year shortened life expectancy compared to the general population. 60% of this excess mortality is accounted for by their poor physical health. Mental disorders account for as much as 44% of social welfare benefits or disability pensions in Denmark, 43% in Finland and in Scotland and 37% in Romania.

Mental Health Programme Distribution of beds per 100 000 population in mental hospitals and in community psychiatric inpatient units & units in DGHs

Mental Health Programme Home treatment

Policy developments supporting the New European MH Action Plan (September 2013) The European Commission launched its European Pact on Mental Health and Wellbeing in 2008, 2008 was marked by the UN Convention on the Rights of People with Disabilities, now ratified by the large majority of European Member States and also the European Unio participation in society, protected from stigma and discrimination). In 2011, WHO statement on user empowerment was produced, with indicators of progress towards empowering mental health service users. In 2008, the WHO launched the Mental Health Gap Program. Reducing health inequities through action on the Social Determinants of health (2010).

Forgotten Europeans, forgotten rights (OHCHR) 2011 This report has emphasized that, under international and European human rights law, Governments should transfer from a system of institutional care to alternative community-based services that enable children, persons with disabilities (including users of mental health services) and older people to live and participate in the community. They will also need to ensure compliance with human rights standards when monitoring the situation of persons receiving community-based residential services.

Ad Hoc Expert Group on the Transition from Institutional to Community-based care. In its report the Expert Group recommended that EU member States should adopt strategies and action plans... accompanied by a clear timeframe and budget for the development of services in the community and the closure of long-stay institutions, with a proper set of indicators to measure the implementation of these action plans.

The vision of Health 2020: a WHO European region where all people are enabled and supported in achieving their full health potential and wellbeing, and in which countries, individually and jointly, work towards reducing inequalities in health within the Region and beyond. It puts forward an agenda for action for Europe, corresponding to the Global Mental Health Action Plan (WHO Geneva).

Values of European Strategy Empowerment: All people with mental health problems have the right throughout their lives to be autonomous, having the opportunity to take responsibility for and to share in all decisions affecting their lives, mental health and wellbeing. Fairness: Everyone is enabled to reach the highest possible level of mental well being, and is offered support proportional to their needs. Any form of discrimination, prejudice or neglect that hinder the attainment of the full rights of people with mental health problems is tackled. Safety and effectiveness: People can trust that all activities and interventions are safe and effective, able to show benefits to population mental health or the wellbeing of people with mental health problems.

Scope Improve the mental wellbeing of the population and reduce the burden of mental disorders, with a special focus on vulnerable groups, exposure to determinants and risk behaviours; Respect the rights, addressing stigma and discrimination, and offer equitable opportunities to people with mental health problems (including dementia and substance use disorders) to attain the highest quality of life; Establish accessible, safe and effective services that meet people's mental, physical and social needs and the expectations of people with mental health problems and their families.

Definitions Mental health a state of well-being in which an individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and is able to make a contribution to his or her community. Resilience the capacity for positive adaptation and generally refers to individuals, organisations, communities or localities that do better than expected in the face of adversity. Recovery a process of change through which individuals improve their health and wellbeing, live a self-directed life, and strive to reach their full potential, whether or not there are ongoing or recurring symptoms or problems.

Strategic objectives Four core strategic objectives Everyone has an equal opportunity to realize mental wellbeing throughout their lifespan, particularly those who are most vulnerable or at risk. People with mental health problems are full citizens whose human rights are valued, protected and promoted. Mental health services are accessible and affordable, available in the community according to need. People are entitled to respectful and effective treatment, and to share in decisions.

3 objectives These are supported by 3 objectives: Health systems provide good physical and mental health care for all. Mental health systems work in well coordinated partnerships with other sectors. Mental health governance and delivery are driven by good information and knowledge.

Trieste / AAS n.1 The Healthcare Agency is organised as follows: 4 Healthcare Districts (each responsible for approx. 60,000 inhabitants), operating according to area (primary care and home care, the elderly, specialised medicine, Rehabilitation, Children and adolescents, Family counselling, District diabetes centre) 3 Departments (Mental Health, Dependency, Prevention) 2 Specialised Centres (Cardiovascular and Oncological). 118 Service for health emergencies 1215 employees. Budget: cash balance 29,327,155.82

The Mission of MHD The MHD shall operate for the elimination of any form of stigmatisation, discrimination and exclusion concerning the mentally ill persons. The MHD is engaged to actively improve full rights of citizenship for the mentally ill persons. The MHD shall ensure that the community mental health services of the LHC have a coherent and unique organisation as a whole, through a strict co-ordination of actions and links with the other services of LHC, particularly with general health districts and emphasizing the relationships with the Community and its institutions.

Todays features in Trieste (WHO CC lead for service development) are: Services: 4 Community Mental Health Centres (equipped with 6-8 beds each and open around the clock) incl. the University Clinic 1 small Unit in the General Hospital with 6 emergency beds; Service for Rehabilitation and Residential Support (12 group-homes with a total of 60 beds, provided by staff at different levels; 2 Day Centres including training programs and workshops; 13 accredited Social Co-operatives); Families and users associations, clubs and recovery homes. Staff: 215 people - 1/1.000 (26 psychiatrists, 9 psychologists, 130 nurses, 10 social workers, 6 psychosocial rehabilitation workers).

PROGRAMMES User training and involvement Information for family members Prison consultancy service Promotion of social enterprise activities Creative/play activities Promotion of self-help activities Intensifying relationships with health districts Intensifying relationships with hospitals Relationships with the citys cultural agencies Gender difference and mental health Prevention of lonely deaths(Amaliaproject) Suicide prevention Special Telephoneproject)

peppe dell'acqua dsm trieste who collaborating center [email protected] 28 Where are the beds today? Year 1971: 1200 beds in Psychiatric Hospital Year 2015: 78 beds of different kind in the community: 26 community crisis beds available 24 hrs. Mental Health Centres (11 / 100.000 inhabitants) 6 acute beds in General Hospital (3,5 / 100.000) 45 places in group-homes (20 / 100.000)

The coops: activities cleaning and building maintenance (diverse agencies) Canteens and catering, incl. Home service for elderly people Porterage and transport Laundry tailoring Informatic archives for councils, etc furniture and design cafeteria and restaurant services Hotel Front-office amd call-center of public agencies Museumsstaff agricultural production and gardening handicraft carpentry photo, video and radio production computer service, publishing trade, CD-Rom serigraphics theatre administrative services Group-homes (type A) Parking

Overarching criteria / principles of community practice in the MH Dept. Responsibility (accountability) for the mental health of the community = single point of entry and reference, public health perspective Active presence and mobility towards the demand = low threshold accessibility, proactive and assertive care Therapeutic continuity = no transitions in care Responding to crisis in the community = no acute inpatient care in hospital beds Comprehensiveness = social and clinical care, integrated resources Team work = multidisciplinarity and creativity in a whole team approach Whole life approach = recovery and citizenship, person at the centre

the central practical-theoretical point If the CMHs is conceived as a simple out patient clinic, that means accepting an unavoidably subordinate situation in terms of structure and work similar to the hospital based services DCS and private clinics. If CMHSs do not control the channels for admission into the old and new hospitalising institutions, they are placed themselves in a peripheral position. Hence the concept of controlling the circuit or the pathways of psychiatric demand

the central practical-theoretical point a new model is developing a strong CMHS working 24 hours a day, equipped with beds and having great flexibility as far as facilities, resources, duties and modes of intervention are concerned. The originally of the Italian concept of CMHS was for it to be the main or the only point of reference for all psychiatric requirements of the entire catchment areas. This allows the CMHS to conduct a continual cycle check.

peppe dell'acqua dsm trieste who collaborating center [email protected] 33 Some relevant outcomes In 2011, only 16 persons under involuntary treatments (7 / 100.000 inhabitants), the lowest in Italy (national ratio: 30 / 100.000); 2 / 3 are done within the 24 hrs. CMHC; Open doors, no restraint, no ECT in every place including hospital Unit; No psychiatric users are homeless; Social cooperatives employ 400 disadvantaged persons, of which 30% suffered from a psychosis; Every year 240 trainees in Social Coops and open employment, of which 20-30 became employees; The suicide prevention programme lowered suicide ratio 40% in the last 15 years (average measures); No patients in Forensic Hospitals.

34 How much does it cost? 1971: Psychiatric Hospital 5 billions of Lire (today: 28 million ) 2011: Mental Health Department Network 18,0 millions 79 pro capita 94% of expenditures in community services, 6% in hospital acute beds

Costs of MHD - 2010 Costs% Staff 11.158.171,0159% Medications 1.077.500,036% General expenses 2.920.853,9516% Social expenses 956.802,885% Personal Health Budgets 2.645.362,8114% Total 18.758.690,68100%

outcome research 75% compliance to antipsichotics (n=587) related to service provision and SN enhancement. 27 people - high priority, 5 years f-up: Highly significant reduction of symptoms severe > 65 p at BPRS from 20% to 4%), increase of social function (50% score), 9 at work, 12 indep living, unmet needs (CAN) from 75% to 25%, 70% reduction of night accomodations. Only 1 drop-out. Qualitative research on recovery / social dimension (IRRG, Am J Psy Rehab 2006) 24 h services (among 13 centres) better for crisis care and 2-year f-up, trust, continuity, comprehensive health and social care (2005). Reduction of emergency presentations in the GH casualty of 70 % in 20 years. 1983-1987, first f-up after reform law showed better outcomes for Trieste and Arezzo among 20 centres due to better organisation and social integration. Satisfaction of users is 78% (2008)

The experience in the Region Friuli Venezia Giulia for reform implementation A clear action for deinstitutionalisation of PH The development of 24 hrs CMH Centres The develpoment of a network of services for rehab and social integration, e.g. group homes, day centres and social cooperatives The creation of strong MH Departments in order to co-ordinate all services according to principles of contrasting social exclusion, stigma and discrimination and promoting social inclusion.

What is a 24hrs CMH Centre? An open door on the street A multidisciplinary team in a normalised therapeutic environment (domestic) for day care and respite, socialisation and social inclusion A multifunctional service: outpatient care, day care, night care for the guests, social care & work, team base for home treatment and network interventions, group & family meetings / therapies, team meetings, mutual support, relatives and other lay people visits, inputs and burden relief. Social cooperative home management Leisure and daily life support (self care; brekfast, lunch and dinner) And many other ordinary and straordinary things

Hospitalisation / hospitality Institutional rules Institutionalised Time Institutionalised (ritualised) relations: among workers / and with users Time of crisis disconnected from ordinary life Stay inside A stronger patients' role Minimum networks inputs Agreed / flexible rules Mediated time according to users needs Relations tend to break rituals Continuity of care before/during/after the crisis Inside only for shelter /respite Maximum co-presence of SN

Hospitalisation / hospitality Difficult to avoid: Locked doors Isolation rooms Restraint Violence Illness /symptoms /body-brain Open Door System Crisis / life events / experience / problems

CSM DOMIO CSM BARCOLA

Personalised Plan (PP) PP funded by Personalised Healthcare Budget and organised along 3 axes indispensable for full social functioning and empowerment : housing, work, socialisation. The PP accesses other services (mental health services, healthcare districts, social services) and community resources (volunteers, social coops, associations, families), and works as much as possible within the users family, physical and social setting. The Healthcare Agency must guarantee the quality of the PP.

Trieste demonstration A town without a psychiatric hospital for 30 years. From total institution to a fully community based service, without barriers, immersed in the community, and a low threshold of access. Practice with the highest degree of freedom, following the principle of respecting users power of negotiation. There are places, like the CMHC, group homes, day centres, socila clubs, where anybody can live health and ill mental health in their interface in peoples lives. Mental health issues are recognized in their intersections with mental ill health and social inclusion (with welfare systems), with justice, with general health and health needs. The paradigm of illness is broken in favor of that of the person. It is possible to open an issue of diverse stakeholders and collective subjects (users, families, networks, community, society) and of their power, while the vertiical power of psychiatric institution has been dismantled.

Deinstitutionalisation as a process The process of the deinstitutionalisation 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 deinstitutionalisation 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.

a) staff culture criticism of psychiatrys 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 organisations). b) relations with the user changing institutionalised behaviour, responding to needs, listening and reconstructing life stories, restoring voices, instigating and sustaining empowerment, creating participation

c) the organisation of life in the hospital humanisation (e.g. dignity of habitat; personalising patient living spaces; private possessions, clothes, keys, wardrobes; managing own money,; contacts with outside world; first outings; finding life stories) liberalisation (e.g. opening up wards; mixed m/f wards; therapeutic community-type meetings; break up totalised life of patients; giving patients a voice; focus on primary needs such as income and housing; individual and group outings; parties; invite family members) deinstitutionalisation (e.g. planning the phasing out and suppression of the PH through sectoralisation and internal reorganisation; 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.)

d) interventions and deinstitutionalisation 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 hospitalisation 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.

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 centres 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 reinclusion of patients/inmates (as opposed to the sector model).

Despite international recommendations, even those of the 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 mobilises actors and resources.

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 specialisations, 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. 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.

The deinstitutionalisation 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.

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 persons whole life and on recovery from the experience of a mental disorder. Based on what we have described above, the transformation process takes place at the following multiple levels: movements (civil society) political legislation service models and practices networks and organised 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.

Terms of reference TOR 1 - Assist WHO in guiding countries in deinstitutionalisation and development of integrated and comprehensive Community Mental Health services. TOR 2 - Contribute to WHO work on person centred care through applying Whole Systems & Recovery approaches: innovative practices in community Mental Health. TOR 3 - Support WHO in strengthening Human Resources for Mental Health.

To support WHO in promoting mental health reform processes with focus on deinstitutionalization (1) Technical support in countries as agreed with WHO, particularly in South/East Europe for deinstitutionalization and development of integrated and comprehensive Community Mental Health services. (2) Promoting intersectoral and integrated approaches and related technologies for governance in low, medium (Czech Republic) and also for high income countries (e.g. Australia and New Zealand, Japan, the Netherlands, the UK), to support social inclusion. In collaboration with GOs, NGOs, community organisations and welfare and general health services incl. Primary Care.

Deliverables (1) Guidelines for phasing out psychiatric hospitals, based on actual experiences in deinstitutionalization. (2) Guidelines for setting comprehensive community-based services. (3) Local report of activities for each countries of pilot sites. (4) Contribute to the collection of Europan good practices on recovery and to the 10 point recovery message (FRA 17). WHO deliverable: contribution to implementation of th European and Global Mental Health Action Plans. Relevant outputs described under WHO/EURO Key Priority Outcome 7 as per WHO/EURO MNH workplan 2014-15: Member States offer evidence based interventions to improve mental wellbeing of the population and the quality of life of people with mental disorders by applying the Global and European Mental Health Action Plans.

To support the development of reform processes in South America through Latin American networks The activity is aimed at providing support to the implementation of Reform Law of 2010 in Argentina, through WHO, by enhancing a network of good practicies and offer training in Trieste to young professionals; in Brazil the shift from institutions to community services will be promoted through training (twinning conventions with Universities). Other countries can be involved in agreement with WHO.

Deliverables (1) Organization of the International School in Brazil. (2) Local reports of activities for each project. (3) Training material related to deinstitutionalization and rehabilitation. WHO deliverable: Contribution to implementation of the Global MH Action Plan: Objective 2: To provide comprehensive, integrated and responsive mental health and social care services in community-based settings.

Collaboration with WHO QualityRights Programme (implementation of WHO programmes and activities at country level) To support human right issues and developments in institutions together with NGOs collaboration with WHO QualityRights in identified countries such as Malaysia and India. Deliverables: (1) A project to implement a no restraint approach in Johor Bahru (Malaysia) and related report. (2) A project for implementing WHO QualityRights toolkit in India (Chennay) and related report WHO deliverable - Contribution to implementation of the Global Mental Health Action Plan. Programme Budget outputs 2.2.1 and 2.2.2.

Strengthening Human Resources for mental health through Franca and Franco Basaglia International School (1) In coordination with WHO, to offer study visits and training courses in Trieste and other relevant demonstration sites from countries named in all other activities or proposed by WHO; and (2) to develop a formal curriculum (International School / Master Course) on organization of community based MH Services, together with other International NGOs and Institutes, as agreed with WHO.The latter is organized in modules (study visits; training packages; workshops; longer stage periods). Deliverables: (1) Each year: n. 5 study visits with 2/3 daystraining packages; a 5-7 days workshop; stage periods of 3-6 months. Trainees: from 40 to150 per year ca.; an expected number of about15 trainee mh professionals will be trained in Trieste for longer stage periods. (2) Diffusion of documents and other material focused on innovative practices in community MH (e.g. alternatives for acute care; comprehensive CMH Centres; rehabilitation,recovery & social inclusion services; deinstitutionalisation & whole systems change; early intervention integrated network; social enterprises & Cooperatives technology, operation & policies).

Contribute to WHO implementation of mhGAP and related support to specific countries In countries where the WHOCC already established contacts with WHO National Counterparts or Programme Leaders and Officers, mhGAP outcomes are addressed through specific agreements within WHO mhGAP Programme. Local developments in Primary and Secondary Care will be supported by mhGAP training and development of multidisciplinary teams. Deliverables: (1) Local report of activities. (2) Planning and adaptation of toolkits and training packages. (3) Related seminars and courses. All deliverables will be shared and exchanged through mhGAP community. Participation tomhGAP annual meeting. WHO deliverable: Contribution to implementation of the Global Mental Health Action Plan. Programme Budget outputs 2.2.1 and 2.2.2.

Conclusions: a paradigm shift 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.

Toward a value-driven service A citizen with rights Helping a person and not treating a illness Understand events of life, overcome crisis Explain and discuss experience Not losing value as a person (invalidation, neglect, violence) Keep social roles and maintaining social networks / systems Develop growth potential (recovery) Have opportunities real empowerment Change (living conditions, style) Material resources (work, money, practical help)

Roberto Mezzina, Director WHO CC for Research and Training, MH Dept. Trieste [email protected] www.triestesalutementale.it

deinstitutionalization processes in international and local context roberto mezzina, director mh...

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