On 5-7 December 2014 the V meeting of the YAID project has been held in Rome. Attend the meeting Felice Bisogni, Stefano Pirrotta and Silvia Policelli from GAP organization; Zana Skejo-Skoric, Tomislav Velìc, Maria Crnjac from Bubamara association; Natalija Olesova, Dana Migaliova and Andrew Šleivys from Viltis association; James Rutherford, Linda Barrett and Briony Williamson from Enable Scotland.
One day has been devoted entirely to visit the services for disabilities managed GAP and to meet various organizations and stakeholders with which Gap cooperates. The first meeting of the day is with Dr. Anna Maria Palmieri, psychologist and head of "Disability in the Adulthood Service" of one of the Local Health Authorities (ASL) of Rome. Palmieri gave us an overview of the services run by the ASL within the VII Municipality of Rome. Secondly we meet Rita Gregori, the President of the “Council of Disability of the VII Municipality of Rome”. Gregori talked about her experience as mother of young adult with disability and giving us an overview of the problems of the families and of the services for disability realized at local level. The third meeting is with two services run by Coop Cecilia, a big care service providers active within the Municipality. In particular we meet the social workers and the users of the day care center "Pizzo di Calabria" and of the group home "The dream of Francesca”. After that we visit the “MadeInPizzuto" social agricultural project run by Gap in partnership with the "Sagittario" Association. Finally in the first day we visit the "Locanda dei Girasoli", a restaurant where a group of people with Down syndrome works and we have a talk with them. The other days of the meeting have been used to discuss the visits and the meetings of the first day, and to discuss the Monitoring Forms filled by the partner organizations, the interviews and the next steps about the dissemination of the project results.
Day one – Visits to the services for disability
Meeting with head of “Service for the Adult Disability " at Local Health Authority (ASL)
The first meeting is with Palmieri at the Town Hall of the VII Municipality of Rome: the territory where Gap works. With Palmieri we talk of the service for Adult disability she manages that is aimed to provide assistance to the adults with disabilities and their families. The service in particular deals with young adults outside the school circuits and Palmieri tells us the difficulty of the service to "respond to the needs of families" and the risk for the operators to be in conflict with the families. "The families often pose complex issues, not coherent with the offer of interventions provided by the service" Palmieri says. In this regard the service aimed to rehabilitate the disability find difficult to address chronic problems that are often impossible to resolve and need to improve new way of intervention to address the problems of the families. Furthermore another problem underlined by Palmieri is that the service is mainly focused on the treatment of the disability rather on providing assistance to the whole family. This often leads to the dissatisfaction of the families that access the service. During the meeting with Palmieri we reflect together on the moment of confusion that the public services are living in a city like Rome, services where the dissatisfaction of the operators and of family members seems linked to the difficulty to reorganize the objectives of the interventions. It emerges in this way the need to find useful criteria to understand the issues posed by the families and to find new ways to organize the services.
Visit to the day care center “Pizzo di Calabria” and of group home "The dream of Francesca”.
After the meeting with the Palmieri we move toward the Capannelle Hippodrome, where we visit the day care center "Pizzo di Calabria" and the group home "The dream of Francesca." Otmar Albertini, coordinators of the residential services of the organization running the services, welcome us starting to tell the history of the service and of the cooperative. The day center “Pizzo Calabria” is aimed, since 1997, to deal with adolescents and young adults with disabilities and mental health problems as half residential service. Main activities of the center include cooking, gardening and making handicrafts and the weekly activities of dance therapy, hippo therapy and swimming pool. The center is run by the Cecilia Cooperative that provide the services with the commitment of the Local Health Agency (ASL RM B). During the meeting we discuss about the cooperatives, as Cecilia, that have “invented” since the 80’ the territorial services in integration and cooperation with the public services directly managed by the local autorities. Otmar Albertini tells us the cooperative has been founded in November 1980 for the will of a group of youngsters motivated to work for the social integration of persons at risk of exclusion. “The birth of the cooperative coincides with the end of the seventies which represented a decade of changes in the social, political and cultural life in Italy” Otmar Albertini adds. In this regard a wide participation of citizens in the movement for civil rights of those years, acting as a "force from below", appears to have played a key role in the development of the social services. However “over the years the power of these values and motivations has decreased leading the cooperative to the difficulty to innovate and to find creative solution for the problems of persons with disabilities and mental health disorders” as Otmar Albertini says.
Visit to the “MadeInPizzuto”: the social agricultural project run by Gap
After the visit to “Pizzo di Calabria” day center and of the group apartment the “Dream of Francesca” we visit the “MadeInPizzuto” a social agricultural project managed by GAP. The project started in July 2012 in partnership with the association "Il Sagittario" for the commitment of 4 families asking us to be helped in building a productive context for their daughters with disability. Over the years the project has changed: before the families paid for some agricultural activities for their children to be organized; now they are engaged in creating a context where parents, persons with disabilities, brothers, sisters, friends can participate. The Lazio Region has financed the project for the next year and we can pay the work of two psychologists and expert in social agriculture. We can also refund the family members, the volunteers and the disabled people participating in the project for some of their expenses. The goal of the project is now to develop a “social enterprise” intended as a context where family members of persons with disabilities and persons with disability can work together and produce something. The project in this sense represents an answer to the problems of marginalization and social isolation faced by the families. They have the desire to participate in a social contexts to have fun, to play a social role and to share with other people the goal of producing something. During the visit we meet the group of parents, brothers, sisters and persons with disabilities attending the project and Mauro Benvenuti, who is one of those, tells us the story that leaded him and his wife to create an organization providing hippo-therapeutic services for persons with disabilities, the “Sagittario” Association, and after that to promote the realization of an agricultural project for their daughter and other young adults with disability.
In this regard listening to Mauro we understand that this particular request of being helped in organizing a productive context is somehow linked with the difficulty faced by the families committing the social agricultural project in using day centers and other services for adult disabled persons. The request in other terms stresses the fact that entering in the adult life the therapeutic services reveal not to be effective in addressing the daily problems of the families. To build a productive context represent a way to connect the services for adults with disabilities with specific objectives providing an alternative to the day centers and to the residential services not clearly pursuing productive objectives. It emerges in this way a connection with some of the problems denounced by Otmar Albertini in the previous visit of the “Pizzo di Calabria” Day Centre and of the “Dream of Francesca” group apartment.
The visit to the project continues with a lunch organized in a special setting: we eat home made food offered by the families participating in the social agricultural project drinking the "White Sagittarius" wine, produced in a social grape harvest few years ago, on a long table placed in the riding stables.
Visit to "Locanda dei Girasoli", a restaurant where are employed people with Down syndrome
After this picturesque lunch we go back to Rome to the "Locanda dei Girasoli" restaurant located in Via dei Sulpici in the Quadraro barrio. We meet Rebecca Leotta that tells us how the "Locanda" employs people with disabilities and that was founded by some families who decide to invest their money to create this enterprise. The adventure however at the beginning was not sustainable and the families asked to be helped by a professional care service provider expert in supporting people with disabilities at work. In 2013 the Consortium Synthesis has incorporated the original cooperative, and with an investment of 400,000 euro has avoided the worst. Today the restaurant, with ups and downs, manages to stay on the market despite being not located in a central area and not reling on any public funding. The decision of not depending on public financing is one of the cornerstones of the project: "We keep ourselves alone and we are proud of it" the team of operators told us. Again the aim of being productive and sustainable seems crucial for the visited service.
Meeting with the President of the “Council of Disability”
The first day of the meeting in Rome finishes at the "Council of Disability" where we meet Rita Gregori, the president of the council. She tells us that since establishment of the Council, the representatives of the families, associations and cooperatives have identified different priorities. In particular, the Consult has chosen to operate to increase the visibility of the issues related to the disability pushing the policy makers to consider the assistance to person with disability a priority within the public services; to increase the level of awareness of the families about their rights and about their possibility to access services; to develop the collaboration between different stake holders dealing with the problem related to the disability; to optimize the use of limited resources (due to reduction of the budget for public assistance). In terms of services provided the Consult runs a front-office service addressed to families asking information about the services provided and help to face their problems. In general the Council plays a coordinating role, activating a network of different agencies that can help the families in coping with their problems. In particular, the front-office services facilitates the access of the families to the "home care assistance", one of the most important and requested service for the families. In this regard with Rita Gregori we talk about the families that, due long waiting lists and lack of financial resources, find difficult to access the services such as the home care assistance. The discussion with Rita Gregori and her story highlights the important connection between the setting up of the services for disabilities and the active participation of groups of families. . . A connection that seems to be part of the story of all the partner organizations and a common milestone of the movement for disability in Europe.
Day two
Discussion about the visits and about the project.
We meet at the House of Participation, a town hall of the II Municipality of Rome with which GAP cooperates . We dedicate the first part of the second day of meeting to a discussion about the visit of the previous day. Zana Skejo Skoric starts talking about the Cooperativa Cecilia that seemed to be very "close to its members" and "has a very interesting history" because has been able over the years to participate in the de institutionalization process creating different services addressed to persons with disabilities and mental health problems. The Croatian partners are in fact very sensitive to the problem of de-institutionalization and are now dealing with a complex situation about this in Croazia. Natalia Olesova adds that persons with disability of the day care center Pizzo di Calabria seemed to be happy. But she was struck because, on the other hand, the faces of the staff seemed very tired. This leads all of us to think about how tiring and difficult it is to work within the services for disability. We talk about the feeling of segregation related to stand, every day, by people with disabilities seen as in need of continuous care and control. This seems connected to the features of the day center services that often are addressed to persons "excluded" from the other social contexts. . We say that it can be difficult to work in contexts like these and that is important to build connection with the community outside the services. In this regard it emerges the idea that the users of "Pizzo di Calabria" may was happy because of the meeting with us; The day care center is in fact located in a quite isolated zone and it is infrequent for the users to have visits within the centre. . This highlight the difficulty often faced by the day care center in Rome to build a relationship with the surrounding context. “This is a problem that seems to be particularly stressed in an urban context of a big city like Rome, where people often ignore each other” Stefano Pirrotta says. During the meeting we compare the day care center service with the Locanda dei Girasoli restaurant that, due to its productive features, seems to have many connection with the “world outside the service”. Dana Migaliova emphasizes that the productive contexts such as those visited the day before, the social agricultural project and the "Locanda dei Girasoli", seem to be very different from those services for disability where “there are activities just to let the time passing”. In this way we underline the importance of having within the social agricultural project and within the Locanda, the together shared goal of producing something. In this sense to produce something to sell or to exchange seems to help the persons with disabilities in being integrated in their community. In this regard we reflect upon the services that in Italy as in other countries, was born as an alternative to institutionalization, and as an alternative, for the family, to keep the disabled person at home without any help. Often these services born as an alternative to big institutions are at risk to become isolated and segregated places separated from the rest of the society. In this regard initiatives such as the “MadeInPizzuto” project and the "Locanda dei Girasoli" are useful not only to build a friendly atmosphere around the persons with disabilities but also to build a context where trough the work it is possible to meet several people, disabled or not.
Speaking of these things bring us to consider how, in each country, the initiatives of families and of groups of families have had a central importance in implementing the process of de-institutionalization and building community based services alternative to the asylums. We underline that in the visits of the first day we have met, for example, three organizations born due to the initiatives of parents of persons with disabilities. “The active initiatives of the parents is very important" Natalija Olesova says highlighting that the Locanda dei Girasoli seem interesting not only for people with disabilities involved but also for the other family members. “Parents are often very tired and weary by the relationship with their children” Natalija Olesova adds and “places where you can build a relationship between parents and children less overwhelming are highly needed". In this sense Natalia Olesova and Jamie Rutherford agree that the working inclusion can be very helpful. .
After that we ask our selves how to help the families facing these issues. Dana Migaliova says that can be useful to help families to stay together in addressing their problem instead of helping the family individually. For Dana Migaliova not all the families are in fact active and there are many families that need to be supported in building their own path. This discussion bring us to reflect to the kind of relationship between the families and the services that we experienced in our daily work.
The Lithuania team members say that in many cases parents ask to be substituted for some ours in the caring of the persons with disability. This can help the families but often, on the other hand, the families don’t want to be engaged in the implementation of the services in an active way.
“The parents’ initiatives are very important in Italy. But there are too many organizations of parents providing services in our context” Stefano Pirrotta comments. “The initiative of parents are often self oriented and there is not a proper coordination of the intervention provided in a specific territorial area” Stefano Pirrotta adds. “The Locanda dei Girasoli, as an example, has been founded by the initiative of some parents but without an help the families wasn’t capable to manage a restaurant” Felice Bisogni says.
These examples bring us to focus the importance of involving the families in the organization and in the planning of the services. . In Italy as an example one problem is that the families seem to be competitor to each other and that the services , specially the public ones, found difficult to gather them. It emerge in this way a problem of a reciprocal distrust between the families and the care service providers.
For Dana Migaliova in this regard it is important to involve families, professionals and volunteers in organizing and providing support. . “Within our organization, Dana Migaliova continues, this is not always easy as within our organization we deal with different generations of parents that deal with the services in many different ways”.“The new generations are used to ask and have the services without being actively involved in their construction”. “The older generation instead are more used to be engaged in the building of the services because they remember the time when there were no services and because they know that their active participation is very important for the quality of the services”. We try to consider this problem in an historical perspective. In each partner country in fact the role of the families and their active participation in the de-institutionalization process has been crucial for the creation of community based services, alternative to the mental hospitals. At the same time nowadays the participation of the families in the disability movements seems somehow decreased in each partner country: the families in this historical period seems to pose requests that are individual rather than collective: this represent a common problem.
For the Scottish partner a very important issue for the care service providers is to deal with the ideas of the parents about the future of their children. In this regard all the partner organization recognize the importance of providing emotional support to the families and of understanding the specific problems faced by each family in its context. “I think one of the most important think is to be reliable with the parents to build some shared path with them” Felice Bisogni proposes. This discussion bring us to consider the importance of the parents’ expectations and the difficulty often faced in accepting the condition of their children.
In this way we remember the word of Rita Gregori about “the illusion” of the families to cure the disability and the costs of the failure of this illusion when the parents recognize that this is not possible. In this regard the building of services aimed to promote the social integration rather than a “therapeutic illusion” seems to give more possibilities to empower the satisfaction of the families and of the care service providers.
After that we started to talk about the working inclusion of the persons with disability. “In Croazia a new law have recently established the duty for the companies to employ at least one person with disability having in exchange of a discount of the taxes to be paid for the work on that person”. “However I’m not sure that the companies will employ the persons with disabilities and I think that they will prefer to pay a penalty” Zana Skejo Skoric adds. In this sense the Crotian example underlines that the laws are often just a first step in the process of organizing effective services. Felice Bisogni proposes that could be useful to start to reflect about how to help the different context in dealing with the persons with disabilities considering them as a resource rather than a burden.
Jamie Rutherford tells us about his experience within Enable Works and the hard work they do to overcome the prejudices of the companies. In this regard we agree about the impossibility to force the social integration process imposing a law and about the importance of developing the cultural representation of the persons with disabilities in each local context. We connect this issue with the problems faced in each country during the de-institutionalization processes started with a law establishing the closure of the mental hospitals and of the Asylums.
This discussion bring us to think that an ideological pretending the application of the law often doesn’t come along with the building of community based services capable to address the problem of the families. In this regard the project team members agree that is often difficult to convene with the families the objectives of the interventions, transforming the aspirations and dream of the families in realistic objectives to be pursued by the services. The working inclusion as an example represents a common aspiration of the families but represents as well an aspiration difficult to be achieved for many families. Dana Migaliova says that “changing the mentality and promoting new cultural of disability is more difficult than making a law even if a law can help in promoting a cultural change”.
For Felice Bisogni the perspective of organizing working context accessible for persons with intellectual disabilities and mental health problems is interesting because within a working context everyone has the possibility to build a social function useful to all the other workers. For Jamie Rutherford in this regard the “Locanda dei Girasoli” represents an interesting experience as the service depends at financial level on the competence in selling the product cooked in the restaurant running a sustainable business within the community. For Dana Migaliova each person can do a productive activities and it is responsibility of the services to find out what each persons want to do and can do better: “each person has his own talent and it should be understood and developed in each context”. This represent an alternative from forcing the persons with disability in doing prescribed activities disregard their interests and competences.
After this discussion about the visits to the services for disabilities and related topics we start to discuss the monitoring forms and the visits made by each partner. In this session of the meeting has each partner present the realized interviews and the answers to the questions posed in the monitoring form. Regarding these points we suggest to read the reports of the interviews and the monitoring forms.
At the end of the meeting we start to discuss the next steps of the YAID project and the possibility to build a new project proposal for the call for proposal of the E+ Program of March 2015. We conclude the meeting with some general reflection on the YAID project’s outcomes. . We ask our self how we are using the YAID project within our daily work starting to think about the compass intended as the final result of the project. Natalia Olesova e Zana Skejo Skoric tell that in their opinion the project has been as an “useful International brainstorming” about how to organize services for disabilities. “The visits have been interesting but the most important part of the project has been the discussion and the confrontation between the partner organizations” Natalija Olesova adds. In this regard we agree that each partner organization and countries have showed interesting aspects of the services for disability demonstrating as well different competences and ways of providing services for disability. In this sense we agree that during the project we haven’t visited developed countries and undeveloped countries and we recognize that the project has permitted the exchange of different experiences useful to learn something new for each partners organization. This is very important and it stress the idea that rather than applying a top-down organization of the services it is very important to set up the services using the different local resources available in each context applying a bottom-up strategy. Furthermore Zana Skejo Skoric says that the interviews has been a surprising experience as they weren’t aware of many desirers of the persons with disabilities attending their day centre before. Natalia Olesova adds that this demonstrate that it is important for the care service providers not to take for granted the problems of the families dedicating time and resources to their exploration. These speeches make us agree about two possible criteria to be included in the compass. On the one hand we agree about the importance for the services to be flexible, being able to go along with the families in building a path from childhood to adulthood. Another important criteria we find out from the discussion is to consider the families and not just the person with disability as the client of the provided services.
