A community without seclusion Territori senza segregazione International meeting Trieste, December 2015 Abstract

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1 A community without seclusion Territori senza segregazione International meeting Trieste, December 2015 Abstract Wednesday 16 December / Mercoledì 16 dicembre 9,30 The issue of rights and the ethics of care as a key in healthcare: can values generate evidence? WHO Quality Rights and the CRPD / La questione dei diritti e dell etica della cura come chiave dei servizi per la salute: i valori possono generare evidenze scientifiche? Il programma WHO Quality Rights e la Convenzione sui Diritti delle Persone con Disabilità. Intro: Roberto Mezzina Objectives: To describe the relationship between ethics / values on one hand, and innovative practices on the other hand. To provide an overview of the current trends in International MH in this direction as well as the human rights approach proposed by WHO. To express the knowledge arising from deinstitutionalization in that field. Obiettivi: Descrivere la relazione tra etiche / valori da un lato, e pratiche innovative dall altro. Fornire una panoramica delle attuali tendenze nella salute mentale internazionale in tale direzione, così come dell approccio dell OMDS ai diritti umani. Esprimere la conoscenza che emerge dalla deistituzionalizzazione in tale ambito. Content: In mental health an approach based that is rights and ethics based can be effective and generate evidences? An hypothesis could be that the combination of the 3 e s (ethics, evidence and experience) is key. 1) Ethics. Human, fundamental rights refer to a whole person, and particularly shared basic values of humanity in an intersubjective care relationship. The paradigm shift that is taking place, even if in a confused fashion, is the passage from the biological medical model for treating illness to the model of a response to real, tangible needs, and thus also the psychological and highly subjective needs (or, as the sociologists say, postmaterialist needs) of the person who is in a state of suffering, helping them in their often long and difficult journey of recovery and emancipation. Nonetheless, as Habermas maintained, a necessary shift is from ethics to enforceable rights. The UNCRPD, as well as the WHO QualityRights programme that descends from it, are now promising a great change in the entitlement of rights for people with mh problems, but there is a gap with the reality of psychiatry everywhere in the world. 2) Evidence. Epistemiology should be based on a person centred paradigm valuing the personal and social experience of individuals as citizens and not on a paradigm of disease. Moreover, innovation in the field of deinstutionalisation, social integration of individuals and integration of services into a coherent network that is able to respond to citizens needs should be studied and supported critically. In compliance with these principles, the network intends to promote, support and perform: research studies on the state and development of community services and their degree of innovation, placing special emphasis on approaches based on ethical decisions and their impact in terms of service responses and change of cultural attitudes towards mental health in the community; research activities based on the evidence emerging from community practice and both individual and collective experience, as opposed to what is traditionally seen as

2 scientific evidence; the epidemiology of today s institutions, taking stock of the paradigm shift and what is being developed on this issue both in Italy and worldwide; any form of participatory research that actively involves individuals with an experience of mental health problems in the setting of services as researchers; more generally, research activities that include a multistakeholder/multiplayer perspective and active involvement, encompassing decision makers, administrations, managers, carers and the community at large; action research initiatives aimed at institutional change; research on recovery and recovery oriented approaches also focussing on their implications in terms of service organisation, the use of resources for individuals and their social inclusion and citizenship critical research on the use of drugs and biological treatments, especially in the form of personal accounts and evidence drawn from the real world any research combining qualitative and quantitative approaches. 3) Experience. The purpose of the meeting is to explore particularly the issue of liberty and freedom in care processes, as opposed to a vision of restraint and denial of subjectivity. Which practices can promote freedom? Can be described an operationalized? Which are related indicators? What connects key words such as open door, open dialogue, free access, community engagement, co production with stakeholders, recovery (also of the whole system) on one hand, and the contrast to restraint, coercion in care, special forensic psychiatry institutions? We need here to widen ciance fo communication and acknowledge complexity. Liberty is therapeutic was in the 70s the motto in the Trieste experience, which is still preserving that legacy, and now Freedom first (as a pre condition for care) can express some of the most significant movement stances, which overturns power mechanism toward people empowerment. Contenuto In salute mentale un approccio basato sui diritti e sulle etiche può essere efficace, generare evidenze? Un ipotesi può essere che la combinazione delle tre e (etica, evidenza, esperienza) sia centrale. 1) Etica. I diritti umani fondamentali si riferiscono ad una persona intera, in particolare i valori condivisi dell umanità in una relazione intersoggettiva di cura. Il cambio di paradigma che sta accadendo, anche se in modo confuso, è il passaggio dal modello medico biologico di trattamento della malattia al modello di risposta a bisogni reali e tangibili, che includono anche quelli psicologici ed altamente soggettivi (come definiti dai sociologi come postmaterialisti) di una persona che è in uno stato di sofferenza, aiutandola nel cammino, spesso lungo e difficile, verso la recovery e l emancipazione. Tuttavia, come sostiene Habermas, un passaggio necessario è quello dalle etiche ai diritti esigibili. La convenzione ONU sui Diritti delle Persone con Disabilità, così come il programma QualityRights dell OMS che da essa discende, stanno promettendo ora un grande cambiamento nella titolarità dei diritti per le persone con problemi di salute mentale, ma sussiste un gap con la realtà della psichiatria in ogni parte del mondo. 2) Evidenze. Occorre fondarsi su un epistemologia basata sul paradigma della persona nella sua esperienza individuale e sociale come cittadino/a invece di quello basato sulla malattia. Va inoltre studiata e sostenuta criticamente l innovazione connessa ai processi di deistituzionalizzazione, d integrazione sociale delle persone e d integrazione dei servizi in una rete coerente di risposta ai bisogni dei cittadini. Attraverso questi principi, intendono in particolare favorire, sostenere e realizzare: la ricerca sullo stato e sullo sviluppo dei servizi territoriali e sulla loro innovazione, in particolare valorizzando gli approcci basati su scelte di carattere etico, e sulla corrispondenza tra essi, le risposte dei servizi e la trasformazione delle culture sulla

3 salute mentale nella società. la ricerca sulle evidenze che emergono dalla pratica territoriale e dall esperienza individuale e collettiva, e sul rapporto tra esse e l evidenza scientifica tradizionalmente intesa. l epidemiologia delle istituzioni oggi, cogliendo il dato del cambio paradigmatico e riprendendo quanto sviluppato in Italia e nel mondo su tale tema. ogni forma di ricerca partecipativa, che coinvolga attivamente come ricercatori le persone con esperienza vissuta di problemi di salute mentale nel sistema dei servizi più in generale, la ricerca che implica il punto di vista e il coinvolgimento attivo di più attori / stakeholders, inclusi politici, amministratori, managers, carers e della comunità in generale le forme di ricerca azione finalizzate alla trasformazione istituzionale (actionresearch) la ricerca sulla recovery e sugli approcci finalizzati ad essa, anche sul piano dell organizzazione dei servizi e dell uso delle risorse per le persone in un ottica di inclusione sociale e cittadinanza la ricerca critica sull uso dei farmaci e le terapie biologiche, in particolare quella fondata sull esperienza diretta (personal accounts) e sulle evidenze tratte dal mondo reale tutte le ricerche che integrano tra loro approcci di ricerca quali e quantitativa. 3) Esperienze. Lo scopo dell incontro è esplorare specialmente la questione della libertà e della liberazione nei processi di cura, che si oppone ad una visione di restrizione e negazione della soggettività. Quali sono le pratiche che promuovono la libertà? Possono essere descritte e operazionalizzate? Quali ne sono gli indicatori? Che cosa lega parole chiave come porta aperta, dialogo aperto, libero accesso, coinvolgimento della comunità, coproduzione con gli stakeholders, recovery (anche del sistema in toto) da un lato, e il contrasto alle pratiche di restraint, coercizione nelle cure, percorsi speciali di psichiatria giudiziaria? Abbiamo qui bisogno di allargare le possibilità di comunicazione e di riconoscere le complessità. La libertà è terapeutica era negli anni 70 il motto dell esperienza di Trieste, che sta conservando questa impostazione, and ora Freedom first per prima la libertà (come precondizione della cura) può esprimere alcune delle più significative prese di posizione del movimento, che rovesci i meccanismi di potere a favore dell empowerment delle persone. 10, 00 Trimbos Instituut Report Freedom First / Relazione del Trimbos Instituut La Libertà per prima. Jan Berndsen It is with great pleasure that we offer you this report with the striking but perhaps somewhat mysterious name: Freedom First. In 2008, we, from Lister, first got inspired by the Trieste mental health practices. We were not the first from the Netherlands, but will certainly also not be the last. Based on the ideas of a RIBW (organisation for sheltered housing), which originally emerged as an alternative to inpatient psychiatry, we saw Trieste as the classic example of how things can be done differently or rather, how they should be done. However, after a number of visits to our Italian colleagues, we found out that we did not clearly understand what the underlying values and principles were that their work was based on. The generally somewhat fleeting visits and also the language barrier did not help us to find the answers. For this reason, Lister, together with the European Assertive Outreach Foundation (EAOF), initiated a thorough investigation into this practice, with financial contributions from Altrecht GGZ

4 and GGZ Breburg. At the end of the day you can take a report with you. It is a beautiful and expressive travelogue. It is a view of the everyday practices in Trieste, with the good aspects of the system and also the imperfections. But it also has depth and examines the system from the anthropological angle. In this way, we hope to provide answers to all the intractable questions we received over the years about our dream that it can be different in the Netherlands. Comments include: there are many more homeless people, many clients are imprisoned or in the forensic circuit, they are given a lot more medication, etc. etc. Our description of the practices in Trieste proves otherwise. In the Netherlands and in your own country, too, it is possible to organise the entire outpatient and communitybased mental health care with a minimum of beds. Freedom First! This is the guiding motto of the health care providers in Trieste. First and foremost, they are committed to the freedom of their clients. This is done, in the most literal sense, by the absence of psychiatric hospitals and closed wards or closed doors and, in other sense, by strengthening their civil rights and supporting personal wishes and choices. Freedom First: Be inspired to use this report as a basis for your work in your own practice, work that could be done differently. I wish to thank Roberto Mezzina, Daniela Speh and all the others for their collaboration during the research. Your visit in Utrecht last year, brought us closer together! We hope that we can work together the next years to exchange more practices and experiences. We offer you our experience in the Netherlands with our knowledge about the participation of experts by experiences and peer support. Thank you 10,15 Topic: OPEN DISCOURSE Open discourse: equal rights, partners and shared practice / Il discorso aperto: rispetto dei diritti, parità dei soggetti coinvolti e condivisione delle pratiche Chair: Benedetto Saraceno, Intro: Jean Luc Roelandt, Michaela Amering Michaela Amering:Trialogue: Liberation in Mental Health Communities. Introduce the Trialogue experience an exercise in communication between service users, families and friends and mental health workers on equal footing, which is indicative of our capacity for surviving and gaining from serious discussions of adverse issues as well as the great possibilities of cooperative efforts and coordinated action. Communications and collaborations between mental health care users and user activists, family carers and friends, and mental health professionals and policy makers outside and beyond traditional clinical and pedagogic encounters are needed to strengthen a rights based approach in the field of mental health and further civil society involvement. In Trialoguegroups users, carers and friends and mental health workers meet regularly in an open forum, that is located on neutral terrain outside any therapeutic, familial or institutional context with the aim of discussing the experiences and consequences of mental health problems and ways forward. Trialogues offer new possibilities for gaining knowledge and insights and developing new ways of communicating beyond role stereotypes. Trialogues facilitate a discrete and independent form of acquisition and production of knowledge and drive relevant changes in forms of communication as well as in structures. Trialogues function as basis and starting point for trialogic activities on different levels e.g. serving on quality control boards or teaching in trialogic teams and different topics e.g. a task force on stigma busting or a work group on trauma and psychosis. In German speaking countries well over hundred Trialogue groups are regularly attended by altogether ~ 5000 people. International interest and experiences are growing fast (

5 11,30 Practice of Freedom Exchanging Practices of Freedom and Liberty / Scambiare Pratiche di libertà e di liberazione (Workshops /lavoro di gruppo) Theatre / Teatrino F. e F. Basaglia (IT ENG) The alliance of Psychiatric Hospitals in transition in low and middle income countries for deinstitutionalization / L alleanza degli OP in transizione nei paesi a basso e medio reddito per la deistituzionalizzazione With the contribution of / Con i contributi di: John Jenkins (coord.), Tasneem Raja, Rossana Seabra, Dévora Kestel, Bertoli Marco, Vito Flaker John Jenkins: International Psychiatric Hospital Alliance To improve the lives of people with Mental Health issues in the hospitals and the community The history of institutions and their legacy The reasons and purpose of the need to establish the Alliance What the alliance will do Call for people and places to join the Alliance Tasneem Raja: Rethinking Psychiatric hospitals in LMRCs To place an alternate dialouge to closure of mental hospitals in the global mental health space Mental health care in India has largely been limited to the care and legal framework inherited during the colonial rule. With a population in excess of 1 1 billion, the country, faces enormous challenges with respect to the provision of mental health care. Integration of mental health into general health care, and training of general doctors in mental health, has been implemented since 1961, but community based care was not introduced until 1982 in the form of the national mental health program.mental asylums/hospitals are a key provider of services even today in India. Shrouded in rights violation and inhuman practices these institutions largely carry forward the legacy of the colonial era in which they were established. Available data indicates that there are 43 mental hospitals in the country. Only 21 of the 29 states and 7 union territories have at least one mental hospital. Of these 13 are teaching hospitals and 30 are only service providers. There is a gap in the available data on hospital bed capacity and occupancy. Available data indicates an approximate 15,000 beds across all the government mental hospitals out of a total of about beds for mental health across government and private sector in the country. It is also noteworthy that the distribution of beds is not equal across different states. Globally, the dialogue around mental hospitals has been dominated by the need to close them down. Based on the experience of the work under the Incense program in partnership with Parivartan Trust and Sangath, Tata Trusts seek to create an alternate dialogue around mental hospitals that models the reform process, addressing barriers of entry and exit. This holds relevance In Low and Middle Income Countries (LMNCs) like ours since bulk of the existing care provision rests in this space.this presentation is being made on behalf of the partnership between Parivartan Trust and Tata Trust in the implimentation of the INCENSE model, the learning from this implimentation and the way forward in meeting the requirement of services for mental health in LMRC settings such as India. Rossana Seabra L alleanza degli OP in transizione nei paesi a basso e medio reddito per la Deistituzionalizzazione Analizzare il processo di decostruzione del manicomio in Brasile e nel mondo. The hospitalization of people with mental disorders in Brazil dates back to the mid

6 nineteenth century. Since then, those with mental disorders were hospitalized in psychiatric hospitals. It is worth noting that the supply of this hospital care concentrated in the centers of greater economic development of the country, leaving vast regions devoid of any feature of mental health care. From the 1970's, there have been early experiences of transforming care, in the beginning guided by intramural reform of psychiatric institutions (therapeutic communities) and later by the proposition of a community centered model to substitute the specialized hospital. It is a broad change in public mental health care, ensuring people's access to services and respecting their rights and freedom. It is supported by the law /2001, achievement of a social struggle that lasted 12 years. It means changing the treatment model: instead of isolation, living in the family and community. Strengthen health policies aimed at groups of people with mental disorders of high prevalence and low care coverage; consolidate and expand a network of community and territorial based care, promote social reintegration and citizenship; and increase resources annual budget for Mental Health. Dévora Kestel: De institutionalization in Latin America and the Caribbean A long way to go to introduce current situation and trends in regards to mental institutions and the way forward in the Americas. I ll present a brief analysis of the existing situation in the Americas Region, highlighting the relevant role that mental hospitals still play in most of the countries. I ll then introduce PAHO s efforts to support countries in their deinstitutionalization process. Vito Flaker, Andreja Rafaelič, Katarina Ficko, Andreja Ošlaj: Tracking the transition to community care in Slovenia. Slovenia has a long mileage of deinstitutionalisation attempts but has not but created two tier system of care with institutions still dominating the system of care. In the last few years, deinstitutionalisation has become a solid European platform of change. Slovenia has made a commitment to resettle three quarters of long stay residents in the next seven years. We will report on the basic open issues detected in a layout study commissioned this year. These are relationship between conversion and substitution of institutions, ways of coordinating the transition, dynamics of transition, role of the care management and community actions, costs of the new services and the system of funding. The crucial issue in Slovenia is not lack of experience, but the lack of leadership of the transition process. To avoid just another experiment in resettling from institutions, there is a need for a strong vision of deinstitutionalisation and a clear date of closure of all the institutions. In the process of building a vision and its implementation there is a need for a firm and dedicated engagement of all the stakeholders users groups, movements, institutions, existing community services and national political structures. Deinstitutionalisation in Slovenia is just a part of a process across Europe and has to be connected by various knots of international efforts. It has to become a common good of everybody and represents one of the very few positive trends of nowadays in general. MH Dep / Dipartimento di Salute Mentale: The assembly model and the peer role in services / Il modello assembleare e il ruolo dei peer nei servizi (IT)

7 With the contribution of / Con i contributi di: Carlo Minervini (coord.), Silvana Hvalic and Peer Support Group Articolo 32, Centro Marco Cavallo Carlo Minervini L Assemblea in salute mentale Rivalutare il ruolo dell assemblea come strumento innovativo nei servizi. L assemblea nella pratica psichiatrica nasce nel 1961 nel Manicomio di Gorizia quando Franco Basaglia, dopo oltre 10 anni di lavoro universitario, va a dirigerlo. Vi trova tutta una umanità legata, violentata, abbandonata. Ne rimane sconvolto ed in un primo momento non sa cosa fare; poi decide di abolire ogni forma di contenzione, ridando ai ricoverati le loro piccole proprietà confiscate all arrivo in manicomio e chiamando tutti e tutte a raccolta in assemblea: lì tutti in cerchio e con pari diritto di parola i ricoverati finalmente possono reclamare bisogni e diritti. Attraverso l assemblea gli operatori si mettono in discussione e i degenti, dopo anni in cui erano stati ridotti quasi ad oggetti, ritrovano la voce; il confronto è alla pari e tutti si sentono parte viva e responsabile di una nuova istituzione che viene inventata ogni giorno collettivamente. Utilizzare l assemblea come metodo di lavoro nei servizi di salute mentale ancora oggi risulta un elemento innovativo ma poco utilizzato. Il Centro Sperimentale Pubblico Marco Cavallo in Provincia di Brindisi a Latiano ne ha fatto invece la base del proprio agire collettivo. Silvana Hvalic Passaggi attraverso i gruppi L abbraccio metaforico : accoglienza, ascolto Attraverso i gruppi per lavorare su se stessi, per dare e ricevere aiuto, nella ricerca di punti fermi mobili. Far fronte ai diversi cambiamenti che si succedono nel corso della vita, in una società in continua trasformazione, per affermare la propria identità sociale attuale e il potere sulla propria vita. The dialogue of practical knowledge between East and West, South and North / Il dialogo del sapere pratico tra Est e Ovest, Sud e Nord (ENG) With the contribution of / Con i contributi di: Benedetto Saraceno (coord.), Sashi Sashidharan, Rajiah Abu Sway, Dya Saymah, WHO Jordan Sashi Sashidharan: Practice of Freedom Session3: In this presentation I will consider how Global Mental Health (GMH) has emerged as an important area of discourse and research as well as a powerful impetus for mental health service development in low and middle income countries (LMIC) in the last few years. At the same time, I will address some of the challenges presented by GMH, including the uncritical adoption of models of mental health care developed in high income countries (HIC) and their implementation in LMIC as part of scaling up services. I will argue that GMH should be truly global, and its focus must include the challenges and contradictions in mental health care in HIC. I will advance the argument for a process of reverse transfer, the adoption of mental health innovations in LMIC and their implementation in HIC as a way of scaling down the technologically driven but increasingly inefficient mental health care in HIC. Forensic the issues and practice of forensic psychiatric institutions. In this presentation I will argue that forensic psychiatry is fundamentally at odds with the values and principles of progressive mental health care and undermines the quality of care and works against the rights of people with mental health problems. I will briefly consider the challenges we currently face in relation to the expansion of forensic psychiatry and the process of reinstitutionalisation as an unintended consequence of

8 mental health reform and community mental health programmes. I will also consider the implications of recent legislative changes (in Italy, for example) and the recommendations of the committee for the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the need to challenge the expansion of coercive psychiatry and why we need to work towards the closure of all forensic psychiatric institutions. Implementing Open Dialogue in Mental Health Services / L implementazione del Dialogo Aperto nei Servizi di Salute Mentale (IT) With the contribution of / Con i contributi di: Renata Bracco (coord), Jimmy Ciliberto, Claudia Alonzi, Raffaella Pocobello. Renata Bracco: Implementation of Open Dialogue in Italian Mental Health Departments and the crisis management. Implementazione del Dialogo Aperto nei Dipartimenti di Salute Mentale e la gestione della crisi. In the workshop dedicated, we should reflect on how the Mental Health Departments will integrate the Finnish Open Dialogue (OD) approach with the management of psychiatric emergencies that usually insist on Psychiatric service for the diagnosis and treatment located in Hospital. Nel workshop dedicato vorremmo riflettere su come i Dipartimenti di Salute Mentale potranno integrare l operatività dell approccio finlandese del Dialogo Aperto con la gestione delle urgenze psichiatriche che di solito insistono sui Servizi Psichiatrici di Diagnosi e Cura situati negli ospedali. A pilot project to implement and adapt the Open Dialogue (OD) started in Italy this year. The Italian Health Ministry had financed the project. The approach OD will be experienced in the context of eight different public mental health departments (MHD) and will need to explore: the various definitions and conceptions of crisis and crisis management for patients on first contact, the state of the art of each MHD with respect to crisis interventions, the good practices in use for crisis management. Quest anno in Italia, con finanziamento del Ministero della Salute, è stato avviato un progetto pilota per l implementazione e l adattamento dell approccio Dialogo Aperto. Il programma del DA verrà sperimentato in 8 diversi DSM e si tenterà di esplorare: le diverse definizioni del concetto di crisi e gestione della crisi nei pazienti al primo contatto con i servizi di salute mentale. lo stato dell arte in ogni DSM rispetto all intervento sulla crisi le buone pratiche in uso per la gestione della crisi. Jimmy Ciliberto: Dialogicity as a paradigm/dialogicità come paradigma The main goal of this contribution is to focus on the difference between dialogicity as a tecnique and dialogicity as a paradigm/ L obiettivo principale di questo contributo è quello di focalizzarsi sulla differenza tra Dialogicità come tecnica e Dialogicità come paradigma. It will be given a brief description of the main ideas which support Open Dialogue, focusing on the aspects that made it a catalyst of dialogic practices, meant to go beyond the therapy room/verrà data una breve descrizione del Dialogo Aperto, focalizzandosi sugli aspetti che lo hanno reso un catalizzatore di pratiche dialogiche, volte andare oltre la stanza di terapia. Raffaella Pocobello: Implementing Open Dialogue in Italy: evaluation strategy and first annotations

9 1) Present the basic theoretic and methodologic concepts of the evaluation research which will support the implementation of Open Dialogue in Italy 2) Offer the first results from our interviews with the directors of the mental health services involved in the project. We present the research design and the first results of a project that studies the transferability of the Finnish Open Dialogue (OD) approach into the Italian mental health system. The project started March 2015, involves eight Italian mental health departments from six different cities in Italy (Savona, Turin, Triest, Modena, Rome and Catania) and promotes the Open Dialogue Approach for the treatment of first psychiatric crises. The Italian National Research Council carries out the evaluation of the intervention, with three principal goals: 1. documenting professionals representations and comprehensions of the theoretic and methodological basics of the approach; 2. evaluation of the therapeutic short term effectiveness for all the treated subjects (new patient) by the means of standardized tools. Patients treated with the open dialogue method will be compared with the outcome of patients treated with the current method of the MHD. The same instruments as those used by the Finnish colleagues will be used. 3. Investigating the point of view of the different stakeholders (users, family members and professionals) with respect to the OD experience. Specific attention will be given to changes in persons expectations and crisis conceptions and experiences. Claudia Alonzi: Implementation of Open Dialogue in Mental Health services the Italian project and other dialogisms / Implementazione del Dialogo Aperto nei servizi di Salute Mentale il progetto italiano e altri dialogismi In the present workshop we would like to present the Italian Open Dialogue project and to share and discuss hopes and preliminary considerations about the process started. 14,00 Topic: CO PRODUCTION Co production, nothing about me without me : involving the user in co production of services / Co produzione, niente su di me senza di me : coinvolgere l utente nella coproduzione dei servizi. Chair: Mario Novello Intro: Fran Silvestri, Dévora Kestel Dévora Kestel : The role of users A perspective from PAHO/WHO (Pan American Health Organization/World Health Organization) To share a regional development: from Caracas Declaration in 1990, to Brasilia Consensus in Advances and challenges. I ll present reasons, modalities and a brief historic perspective of how the role of users can be promoted, supported and strengthen, with particular emphasis of the development in the American Region. 15,30 #Practice of Freedom Exchanging Practices of Freedom and Liberty / Scambiare Pratiche di libertà e di liberazione (Workshops /lavoro di gruppo) Theatre / Teatrino F. e F. Basaglia (IT ENG) Peer support and community integrated services: not a utopia? / Supporto tra pari e servizi territoriali integrati: non un utopia? With the contribution of / Con i contributi di: Sonja Van Rooijen (coord), Christien Muusse, Jako Van Diessen, Phil Chick

10 MH Dep / Dipartimento di Salute Mentale Recovery colleges / Formazione per la recovery (ENG) With the contribution of / Con i contributi di: Fabio Lucchi (coord), Fran Silvestri, Barbara D Avanzo Fabio Lucchi: Esperienze di coproduzione per i servizi di salute mentale: i recovery colleges 1) Definire la coproduzione e la sua rilevanza per i servizi di salute mentale con riferimento alla recovery 2) Descrivere il modello del recovery college come prototipo di un servizio coprodotto. 3) Descrivere i risultati delle prime valutazioni 4) Breve presentazione dell esperienza del Programma Formazione ed Opportunità per la Recovery Il tema della coproduzione attraversa ed orienta da diversi anni il dibattito sulle prospettive dei servizi pubblici. Evidenze della ricerca sostengono l impatto positivo sugli esiti degli interventi socio sanitari quando sono basati su un rapporto di coproduzione fra operatori ed utenti. In questo quadro di riferimento recovery e coproduzione si configurano come paradigmi complementari e la loro decliniazione concreta nelle pratiche dei servizi di salute mentale è variamente indagata e sperimentata al livello internazionale. Da più parti si indica l opportunità di sperimentare servizi o modalità operative ( prototipi ) per supportare l innovazione sociale e socio sanitaria: i recovery colleges rispondono a questa finalità, come dimostrato dalle prime valutazioni pubblicate su questo recente modello di formazione per utenti ed operatori interessati a percorsi di recovery. Diffusisi recentemente nei paesi anglosassoni, i recovery colleges si stanno diffondendo anche in Europa. In Italia, ad esempio, dal 2012 è attivo a Brescia il Programma FOR, nato da una collaborazione con il Progetto inglese IMROC. Barbara D Avanzo: Challenges and promises of the Recovery Colleges 1) To define the role of Recovey Colleges in the process of organizational change in mental health services and in the model of co production. 2) To briefly examine the issues dealt in the Recovery Colleges. 3) Challenges posed by the evaluation of the effects of the Recovery Colleges, and identification of the appropriate indicators. 4) To pose the question about the framework where the Recovery Colleges should exert their action: mental health services only? The Recovery model is feeding efforts towards radical organizational changes in the mental health services, where co production of consumers and professionals is one of the main features, although not the only one. The Recovery Colleges represent the idea that what matters and what should be learnt and put in practice cannot be defined only by professionals, researchers and policymakers. Ultimately, knowledge is at the centre of the Recovery Colleges challenge. This point concerns not only mental health but other disciplines and areas of intervention biomedical, psychosocial and social. Indeed, the idea of co production of knowledge and the acknowledgment of different sources of knowledge is a principle which concerns the idea of health and public health. The Recovery Colleges can, in principle, overcome the borders of the mental health services, and become a way to educate the lay public, people with mental disorders in charge of the mental health services who want to find answers outside the mental health services, people with mental disorders not in charge to the services, and the potential stakeholders. Some experiences of this kind have been conducted. This may have the effect of widening the spectrum of the issues dealt, and the people

11 reached. The Recovery Colleges can also represent the framework for a more effective exchange between professionals and consumers: not only consumers explain what is more relevant for them and help other consumers, family members and professionals assume a new perspective, but professionals can take the opportunity to be clearer about their theoretical background, and the barriers they perceive to consistently operate in a recovery oriented way. Finally, we will consider the need to evaluate the effects of the Recovery Colleges, acknowledging the problem of finding appropriate indicators for the most interesting and meaningful outcomes of this process. Recovery houses outside or within the system? / Case per la ripresa, fuori o dentro il sistema? (IT) With the contribution of / Con i contributi di: Izabel Marin (coord), Paul Baker, Roberta Casadio, Raffaella Pocobello Raffaella Pocobello: Recovery Houses: a multi stakeholder evaluation 1. Outline the basic theoretic and methodologic concepts of stakeholders based and participatory evaluation 2. Present the research design and part of the results of the research conducted in the contexts of the two Italian experiences of recovey house, Faenza and Trieste 3. Discuss hot issues relate to the recovery houses research outcomes The first recovery house experience in Italy took place in Faenza in 2013 due to the initiative of a family members association and the collaboration with expert recovery consultants. It was a four months residential experience in an old landhouse, where 12 clients were expected to live together, spending the majority of their time on house management and working intensively on the their experience, on social relations and planning their recovery journey. 6 volunteers both professionals and non professionals constituted the recovery staff. Family members were very involved at the beginning but less at the end of the programme. Voice hearers group was available. There was only little integration with mental health services and reducing medication was part of the programme. Since 2015 May, a second recovery house experience take place in Trieste in the context of mental health services, in collaboration with IMHCN. It is a six month residential programme, where 6 users are expected to live together, planning their recovery but continuing working or studying activities outside the house. Professionals referring to mental health centers take charge of the patient even if another team of professionals is fully dedicated to the recovery house. Voice hearers group is available. Reduce medication is not a persuaded goal of the programme. The house in collocated in an urban context. Family members participate through meeting and is involved in psicoeducational training. Participatory observation and process evaluation was carried out as well outcomes evaluation (with assessment baseline, at the end of recovery house experience, every 6 months) was carried out by the National research council and is still ongoing. Parts of the results of the evaluation of both the experiences will be discussed. Personal healthcare budgets and shared care and treatment planning / Piani di cura condivisi e budget individuali di salute (ENG) With the contribution of / Con i contributi di: Fabrizio Starace (coord), Morena Furlan, John Jenkins, Vito Flaker Fabrizio Starace: Personal healthcare budgets and shared care and treatment planning

12 Personal health budget (PHB) is a tool to offer personalized interventions and support to subjects with mental health disorders. Barriers to its applications will be reviewed. Two main questions arise from initial implementation of PHB, namely how to release the funding to offer personal health budgets to large numbers of people and what criteria should be applied to select subjects eligible to access the option of a personal health budget; moreover, strategies to have individuals and families as real partners in their care and support, are far to be fully endorsed. Morena Furlan: Generating opportunities: the individual health budget as a tool of social inclusion Representing the personalized health budget as a shared tool able to support social inclusion, capability, recovery s process, facilitating cultural changes and requalification of economical investment. The personalized health budget, has shown remarkable advantages in terms of efficiency, effectiveness and, ultimately, cost effectiveness. More specifically, it showed to be a viable tool to re qualify and make social the healthcare spending, contributing to build a new welfare community. The partnership relations developed within the participatory co design culture create, with private non profit organizations, represent a strategical outsourcing for Public agencies. The process of shared decision making that brings together many kinds of expertise, allowed to shift from a gift model to a citizenship model with the individual at the center of the service system (Duffy, 2010). Finally, as Trieste s experience is demonstrating, within this methodology, it s possible to move conspicuous resources from residential structures to co housing projects, supported work training and social programs, more closely to the concrete needs of people, contrasting new forms of institutionalization. John Jenkins: Personal healthcare budgets and shared care and treatment planning To construct and implement a co produced care and treatment plan Based on an equal relationship Knowing the Person Recovery and Wellbeing Plan Milestones in progressing the Recovery journey and celebrating achievements and small steps Changing the language we use Vito Flaker, Andreja Rafaelič, Mateja Nagode: Present the need to integrate personalised care and social inclusion. Personalisation has been one of the main themes in social and health care in the last two decades. Deinstitutionalisation demanded and at the same time made it possible to create person centred responses to human needs. Many experiences in developing personal budgets and direct payments have shown that it is not enough just to create services around a person but also to fully include them in the community. To engage service users and for them to fully integrate and connect with others there is also a need for collective services that will not only empower the community but also made it possible for service users to gain more collective contractual power. An independent life is not really possible without connections, comradeship and solidarity between people. The secret of good social and health care is in personal relationship, informal care, solidarity, love and friendship. Therefore, personal budgets and direct payments cannot be just an idea that provides a total and comprehensive personal care in the community but it has to empower and activate the whole community to be able to include people with different disabilities in it. Personalisation is on one hand a way of providing quality and flexible personal services, and on the other a way of providing care that enables the users to unite in different initiatives and cooperatives that will enable social inclusion.

13 Thursday 17 December / Giovedì 17 dicembre 9,00 Theatre / Teatrino F. e F. Basaglia Topic: ENGAGING COMMUNITY Community development and learning sets, changing the thinking, practices and system / Il coinvolgimento della comunità Sviluppo di comunità e learning set, per cambiare il pensiero, le pratiche ed il sistema. Chair: John Jenkins Intro: Paulo Amarante, Benedetto Saraceno John Jenkins: Whole Person,Whole Life Whole System,Recovery into Practice Changing Thinking,Practice and Systems through Action Learning Sets TO improve the mental health and wellbeing of service users through critical reflection of how whole life needs are currently met or not met in services and practices. TO implement Recovery values,principles and practices TO build trusting and equal relationships between the user,family member and mental health workerto change the culture of services Breaking down the barriers of institutionalisation Description of what we mean a Whole Person,Whole Life Whole System Approach to be. What is and what is not Recovery? The true meaning of deinstiutionalisation. Action Learning Sets:purpose, structure and programs Examples of IMHCN Action Learning Sets Evaluation of and Outcomes from Action Learning Sets Users and family members experiences Changing the Culture in organisations Mental Health Workers experiences Paulo Amarante: La partecipazione sociale nelle politiche di salute mentale e riforma psichiatrica brasiliana. Riflettere sulla specificità della partecipazione degli utenti, familiari, operatori sanitari e attivisti per i diritti umani, le libertà democratiche e la cittadinanza in Brasile nella politica pubblica della salute mentale e di riforma psichiatrica. Sviluppare il concetto di riforma psichiatrica come un processo sociale complesso è costituito da quattro dimensioni fondamentali (epistemologici, assistenza tecnica, legale, politico e socio culturale) e come questi principi costituiscono un processo di lotte sociali e partecipare alla costruzione di politiche pubbliche di salute mentale e riforma psichiatrica in Brasile, affrontando gli aspetti concettuali, l'invenzione di nuove strategie e dispositivi di assistenza, l'emancipazione sociale, autonomia e cittadinanza che permeano azioni legislative, giudiziarie, educativi, culturali e del lavoro, tra gli altri Benedetto Saraceno: Il coinvolgimento della Comunità: cosa significa comunità nelle grandi megalopoli? Analizzare criticamente la nozione di comunità mostrando i limiti della tradizionale nozione di comunità nei grandi contesti urbani Nei contesti delle megalopoli la comunità è sempre meno definita da una geografia omogenea e sempre piú dalla eterogeneità identitaria dei gruppi umani. La analisi della dinamica fra identità e cittadinanza è essenziale per comprendere cosa si possa definire comunità. 11,00 #Practice of Freedom Exchanging Practices of Freedom and Liberty / Scambiare Pratiche di libertà e di liberazione (Workshops /lavoro di gruppo) Theatre / Teatrino F. e F. Basaglia (IT ENG) Experiences in WHO Quality Rights / Esperienze nel programma WHO

14 QualityRights With the contribution of / Con i contributi di: Pina Ridente (coord), Kamala Easwaran, Abdul Kadir, Mauro Carta Mauro Carta: For implement the WHO project Quality Rights in the Mediterranean area to illustrate the support and promotion of Quality Rights in the Mediterranean In Mediterranean area people are living feelings of war under way and a kind of state of siege. This is the case of dealing with disability; it would not be appropriate to deal with the other? Or maybe stay closed at home. But the defense of the rights of persons with disabilities is a shared value of our cultures Catholic, Islamic and Jewish, is a civic value that must be defended in this more than at other times. For this reason we decided to continue the work for implementing the project in QualityRights in the Mediterranean area and to continue to share contacts with professionals, users and family members of the region's countries as required.. We discuss the project shared by the University of Cagliari with WHO regarding continuous training together with the first attempts to implement the project. In particular, we discuss the first data of work conducted in the major psychiatric hospital in Tunisia to highlight the difficulties and share a strategy that allow to following the interventions. In this perspective we will speak of the idea of a portal for e learning in which we are actively working. MH Dep / Dipartimento di Salute Mentale Community engagement, partnership, responsibility and multisectoral interventions, a whole system approach / Il coinvolgimento della comunità e gli interventi multisettoriali in un approccio globale al sistema (IT) With the contribution of / Con i contributi di: Thomas Emmenegger (coord), Paulo Amarante, Fabrizio Starace Thomas Emmenegger: Le opportunità degli spazi e le capacità delle persone. Come rendere gli spazi attraversabili e le capacità applicabili? La visione di combinare il lavoro per la qualità urbana (fare città) con il lavoro per la qualità della vita. Si espongono alcuni esempi di progetti (riusciti e falliti) che si occupano di combinare politiche e pratiche integrate della cura della città (fare città) e della cura della persona. 4 tesi sul community approach: 1. Fa sviluppo locale/urbano senza essere locale. 2. E un sistema che nel suo insieme è inclusivo, nel suo particolare competitivo. 3. Ha una capacità trasformativa nei confronti delle politiche e pratiche e tende a renderle integrate. 4. Focalizza sui casi/passaggi difficili/complessi (casi/problemi di alta priorità). Fabrizio Starace: Il coinvolgimento della comunità e gli interventi multisettoriali in un approccio globale al sistema. La partecipazione consapevole della Comunità alle politiche di Salute Mentale è elemento essenziale promuovere e radicare nel territorio e nei servizi un pensiero volto a valorizzare il sapere, le risorse e non solo i problemi dei cittadini con disagio psichico. Verranno passate in rassegna le principali iniziative adottate nel DSM DP di Modena per facilitare processi di empowerment, valorizzare le possibilità di gestione della malattia e la capacità di elaborare progetti di vita da parte di operatori e utenti, considerare guarigione e miglioramento della qualità della vita obiettivi comuni, promuovere forme di auto organizzazione, automutuoaiuto e contrattualità collettiva rispetto al

15 funzionamento dei servizi. Whole Community, Whole Life Whole System Learning Sets / I sistemi di apprendimento globali basati sulla comunità, sul sistema e sulla vita (ENG) With the contribution of / Con i contributi di: John Stacey (coord), John Jenkins, Paul Baker, Jayne Whitney Community based rehabilitation and capability approach / La riabilitazione nella comunità e l approccio alle capacità (ENG) With the contribution of / Con i contributi di: Lucilla Frattura (coord), Marcelino Lopez, Afzal Javed Lucilla Frattura: How much is the community based approach to health effective in producing functioning? Outcomes in three cohorts from community based mental health services, community based services for children with disabilities and community based services for adults with disabilities in Friuli Venezia Giulia. Using the VilmaFABER TM system, an assessment system developed by the Italian WHO Collaborating centre for the Family of International Classifications: to describe the distribution of the mix of resources invested in individual functioning outcomes (health services, social security interventions, general social support interventions, professional carers, non professional carers and relationships, products and technologies, material and immaterial goods) to describe the usefulness of the investment in individual functioning using the infographic Family of Functioning Indicators to study the use of the community based approach to health and rehabilitation for all to set up a register of individual health budgets and their outcomes in order to follow up investments and results sistematically 490 outpatients in charge to community based mental health services (N= 133), community based services for children with disabilities (N= 173) and community based services for adults with disabilities (N=184) were assessed in order to describe the mix of resources invested in their functioning. The data are shown referring to the three groups in order to compare the corresponding mix of resources and the associated functioning results. Adults in charge to community based mental health services showed better functioning oucomes than the other two groups (CFR > 0.86). Investments in functioning were different among the three groups, and, inside each group, among three different clusters. The community based approach to functioning and health was the basis for all assessed persons. Nevertheless the obtained functioning results were not equally distributed. The VilmaFABER TM system was useful to set up a pioneer register to follow up investments and results of multisectoral community based interventions. It also provides an initial database which might support capabilities oriented policies. Afzal Javed: Promoting empowerment and financial autonomy for schizophrenic patients: An experience from a developing country Introduction: Schizophrenia is a chronic and disabling psychiatric illness, with the majority of patients experiencing multiple relapses during the course of the illness. This illness is characterised not only by its florid and extraordinary positive symptoms, but also negative and disorganisation symptoms that affect almost all aspects of social functions as well. Outcome in Schizophrenia is often conceptualised in terms of remission, recovery and