Saturday 14 December 2013 – morning session:
Attend the meeting Felice Bisogni, Stefano Pirrotta and Silvia Policelli from GAP organization; Zana Skejo-Skoric, Tomislav Velìc, Maria Crnjac and Mirko Skoric from Bubamara association; Natalija Olesova, Greta Klimaite, Andrius Sleivys from Viltis association; James Rutherford, Linda Barrett and Briony Williamson from Enable Scotland.
From Italy Felice, Silvia and Stefano presents themselves: are psychologists and social researcher and have in common a training experience in psycho-sociology and the interest to develop a new model of intervention in the field of disabilities.
From Croatia Zana presents herself as an expert assistant and an Italian teacher working with disability since two years, together with Tomislav, the head of Bubamara Association, Maria the secretary and Mirko a volunteer of the association and Zana's husband.
From Lithuania Natalija present herself as project manager working in the Viltis association for 6 years. Together with her Andrius, kinesotherapist of the day care centre “Vilties Akimirka” and Greta a lawyer.
Finally from Scotland Jamie present himself as project manager from the office of Enable called “Enable work”. With him Linda that manages school projects since 20 years and Briony that works as psychologist on “the transition from school to work”.
Zana talks about Bubamara describing the ongoing projects and services. Bubamara works on “two fronts”: physical and intellectual disabilities. The association usually realizes “mobile unit” services to help people with disabilities for their needs. Zana explains that Croatia is crossing a period of big change regarding intellectual disabilities: unlike the previous periods people now have a guardianship from the state and the right to vote to the election. This, however, is a controversial point that divided the population between who says is a great progress and who says there is the risk to expose disabled person to be manipulated by politicians. “One big problem – Zana continues - is the lack of people with intellectual disability employed: to find a job you need to renounce to the benefits by the state”.
However for Zana the most urgent problem in Croatia is the closure of the “institutions” planned for the 2015.
“There are no planned services and the independent living model it's not a solution in every situation”. Another important problem concerns what will happen after the death of the parents: “in our rural area there are not enough mobile team, there are no expert, there is nothing and there isn't an alternative to the institutions” said Zana bitterly Bubamara applies for European founding to offer care services at a local level. “Bubamara has 330 members, 100 employed people, most of them are family members of people with intellectual disability”.
In this sense for Bubamara the families can became care service providers.
We also discuss how at the national level, the money distributed by the State, the laws and the benefits highlighted differences between the countries involved in the project: we are not identical from each other. The let motif of the discussion is a comparison between the different organizations and the different countries. In this perspective we refer to ourselves as developed and the developing country, working in a central or peripheral area, with mild or severe disabilities.
We describe a fragmented context where people, families, service providers are separated from each others by the labelling process of the individual diagnosis. A process that seems not to offer clear criteria to bear projects and services in an useful way.
“Scotland have a big service traditions while in Croatia 10 years ago the concept of disability didn't exist and people just have to stay in the institution” Timoslav says highlighting that different cultures, histories and values organize different way to look at the disabilities problems.
Emerge a generalized conflict with the network organizations competing with the local organizations without building common rules and differentiated functions. Network organizations are seen as unreliable and not really interested in the needs of the organizations at local level.
“In Italy the situation is quite complex Felice says -good laws as one that forces the employment of the disabled workers are not effective and the 80% of the enterprises prefer to pay penalty instead of employ them”.
“Just in the third sector in Lazio region there are more than 3000 associations as if everybody had started to think the only possibility is to implement the services on their own” Stefano says,
A generalized problem of isolation invests each social agency in Italy: politics, third sector, public care service providers and families.
“We notice that the families find difficult to talk about problems and to share it with others. For example in the rural area where we work, families knowing each other since many years find difficult to face disability problems together. Disability problems seems to be lived as a stigma and families prefer to “wash the clothes in their home” instead of asking a hand” Felice says.
It is not easy to agree with the families that disabilities is not an individual problem. Families seems reassured to look at disability as an individual problem to be treated medically as the diagnosis suggests. On the other hand the care service providers often have no idea of the family daily problems limiting their view to the medical or assistantship aspects.
Families have not confidence in the care service providers and often build a conflicting relationship with the teacher in the school or with the doctor in the Mental Health Centre.
Jamie agrees: “Enable is a big organisation and families can find it uncomfortable letting professionals into their lives. There is sometimes a lack of trust from families when organisations are involved in people’s lives and it would be better to develop a productive relationship”.
At this moment Linda says that enable implement lot of different services as supported independent living, respired services, projects for older parents worried for when they’ll die and also a social enterprise: one coffee shop.
Coffee shop is the service that seems to be more interesting for the partner organizations.
Zana asks if everybody in the coffee shop is disabled person and what kind of disability do they have. Natalija would like to know if people without disability can visit the coffee shop and if it is opened to the public.
What sound incredible is that the coffee shop seems to be different from the traditional job for people with intellectual disabilities.
However also the coffee shop seems to have some problems. Enable in fact look at this project as a training service to make people with disabilities employable in other work places. For the families instead is something would like their child to stay forever. “We never have problems with people with intellectual disabilities we only have problems with their parents” Zana adds.
Natalija adds that in Lithuania Viltis runs a training centre where people with disability make different activities and products to sold in a shop in the old town. Municipality pays the rent for this shop but “just the care service providers have a salary”.
Another service, Natalija speaks, is the “respired care service”. The service allows parents of people with intellectual disability to take time to have a trip for a couple of day. In the past parents of disabled persons could use such a service in the day care Markuciai and it was really popular before the Municipality decided to close it. It is reopened in Vilnius again, but due to high price (and bad advertising) it has no clients yet.
We start to search a reason for this situation.
“Probably it is a money problem” Zana says. “It's strange cause on the one hand they ask for this service and on the other they do not want it: we can say that this is a service more for families than for person with intellectual disabilities” Natalija says.
“Also in our Green House project in Italy the families ask us a respire care services but at the same time they don’t make this request in an explicit way” Felice says.
“It can be also a problem of distrust. In Bubamara families can choose their personal assistant: we usually pay the first neighbours as a personal assistant” adds Timoslav. “Families - Zana continues- can ask different things from the hygiene works, to go to the doctor or to go shopping, staying in the community”.
Saturday 14 December 2013 – evening session:
Natalija describes a set of services starting since the birth of the child is born. “Families can go to the child developed centre, to have consultations to deal the big shock of a child with disability”, Zana says.
Viltis manages a day care centre for 20 people with severe complex disabilities with medium age of 21 years old. “The day care centre let the parents go to work and this is a big success for their needs”.
Viltis has 52 financially independent branch offices working directly with the municipalities of the country. The Municipalities have the responsibility to check project and distribute financing asking for a more direct relationship with the local branch offices. Viltis works strictly in touch with the Department for the Affaires of disabled at the Ministry of Social Security and labour. Each week the head of the organization participates in the meeting at the Department for the Affaires of disabled at the Ministry of Social Security and labour to give advice for the elaboration new policies. “It is very important to work with the authorities and the ministries - Natalija says- Lithuania is small country this is big plus”.
In this sense Viltis's history expresses a different, quite efficacious, relationship with the public authorities capable to build services.
In this sense a better linkage with politics seems to organize a different way of working in the field of disabilities preventing the feeling of displacement lived as an example in Italy.
Rehabilitation
program is arranged for persons with disabilities and their families on the
Baltic seashore. During the camp parents have “free times” to go where they
want. The most popular activities for disabled persons are parties; in the day
time parents can participate in consultations with psychologists or in
self-support groups to discuss their problems. Recently a group of 60 people
from Belarus have participated in the camp bringing their own volunteers and
supplying the lack of volunteer that Viltis faced in this period. “Young people
-Natalija says – during the summer try to earn money to study”, therefore it is
difficult to gather volunteers for work in the summer camp.
Regarding the self advocacy Viltis gives to the disabled persons the possibility to represent themselves and their needs. There is a Council of people with disabilities that arranges meeting every week. Natalija tells us that in one of this meeting one person with severe disabilities said that his dream is to work. “We are happy and at the same time disappointed: we do not know what to do”. “Also the mothers have dreams that can't come true: they want swimming pool to be equipped for people with intellectual disabilities” Natalija says.
In this way we start to discuss how we can deal with it the request of the families.
“I don't like to hear that people with disabilities had impossible dreams. They just want normal things. Maybe we do not have to feel that we have to fulfil their dreams, probably they just want to be useful for a while” Zana says.
This seems important if we look at the meaning of the requests of the families. Families demand strategies to be welcome within the context of daily living and to be useful within their local community.
Nowadays Enable is working within the further reform of social care based on the individual budget's concept. For Jamie is very difficult to improve new services because families are scared by change. Enable works especially with youngsters with learning disability supporting them to come in the adulthood getting a job. Enable runs also services for the independent living or for helping parents that do not expect to have a child with disabilities. Other services are clubs and groups mixing people to facilitate the participation in the social life. In Scotland there are both integrated and special school and “the transition” seems easier starting from the integrated one. “However when people has a severe complex disabilities there are less chance of a successful transition”. Enable works directly in the school “struggling with teachers” and supporting people in having some working experiences or talking about what they would like to do in the future.
An expectation of a big change is shared by “mom and dad” when the children finish the school. The main possibilities when the school finish are to look for a job, going to professional college course for many years or having a training. “At 18 for the authority peoples with intellectual are adult, start get benefit by the state entering the services for intellectual disabled persons”. “The problem is with mam and dad expectations: they are scared from job or for the possibility to be bulling at work”. “They are afraid to use public transports” Linda says.
“We run a project called Travel Buddies, where someone who has a learning disability mentors another person to use public transport. Sometimes parents are worried about letting their children be supported by another person with intellectual disabilities” Jamie adds.
We discuss how powerful can be the labelling process separating and stigmatizing people and families with intellectual disabilities: “there is always someone more disabled than you”.
“Moving people to work can be very challenging for mum and dad because they do not want the son go to work or living in his own home. They often do not have expectations for their sons and often complain with services. We find very hard to engage families” Jamie says.
Expectations of parents differ from the expectation of care services providers and emerge a conflict shared at European Level.
“We do not have any complain for disabled people, this is not good, we have to improve their capacity to give us a feedback” Jamie says.
On the other hand some projects usually work better: football project with youngster playing together or a video game contest, participative project based on gardening activities or project for the active citizenship of youngster with intellectual disabilities. This projects are really appreciated by the disabled persons and by the families.
“The problem is also the social condition” – Jamie adds. “Families are often unemployed and look with more suspicious in front of professionals because they have fear of losing their benefits”. “This is a problem because many families receive lots of benefits and we have to work with them to show they are better off in work” Linda adds.
“In Lithuania there are parents don’t want to attend the day care centre because they have to pay a small amount of money” Natalia says.
“Probably it is similar to the situation someone face losing the job. If you don’t have any plan or prospective for the future is very difficult to take a risk. Why do renounce to you dream and benefit if you do not have a realistic plan for the future? ” Felice says.
We convene that the problem regards future, hope and objectives.
We reflect on the meaning of the terms expectation: expectations are feelings, shared by the families, anticipating something unknown and uncertain about the future.
The risk for this mother seems to remain isolated without relationships in the local community. In this sense professional and community are considered as the opposed terms of a sociological relationship. This issues could be discussed more deeply for a better understanding.
For Zana the problem is that professional skills are not enough to do this job: “the importance is your secret talent to get in touch with people”.
On the one hand the capacity of building the relationship with the person can be considered an important part of the work of caring. On the other hand the “secrecy” of this competence can be a problem if you aim at facilitate a training process for care service providers.
How to realize a set of criteria for the caring of the relationship with people with intellectual disabilities? This can be an interesting question for us.
“The problem is the disability often have no words. It seems as if disability has to be directly experienced to be understood” Silvia says. “I don’t think is necessary to speak about disability. For disabled person is their natural condition” Zana replies. “Probably we do not need the diagnosis we can just ask to the families and the persons with intellectual disabilities what they would like to do”, Briony says.
This seems an interesting point. Diagnosis, as disability, seems an individual label not facilitating families in talking about their daily issues and problems. At the same time disability seems to represents also a way to look at problem considering disability as naturally existing. On the other hand we can look at disability as particular label that organizes certain type of relationship between different stakeholders such as families, service providers, neighbours, institutions.
“A suspicious relationship is something really common also in Croatia. Probably it's strange to deal with someone offering help” Zana says. We conclude the first day of the Kick Off meeting discussing that “to ask an hand to face problems” seems difficult as if everybody feel to be obligated to be autonomous.
“If we interview families too close to us the risk is that people not feeling comfortable will not tell us their thought just saying that everything is OK” Briony says. We decide not to strictly to define a target group and Briony suggests to engage in the interviews families quite strangers to us not directly involved in the service we usually run.
At this point Zana asks “What is our main goal in the project? If our goal is a set of new services or to lobby for better policy? It’s better to define our goal and then to go towards it. We know what the problems of the families, we see them every day but we here in Rome while they are in their home: lonely and isolated”.
Zana poses a complex question about what could represent an outcome of our European partnership. The mind goes to conflicting relationship with the “union” of disability organizations in each country accused for “not directly working with the families”. In this part of the meeting we experience how difficult is to build a useful function working together in a networking project.
In this sense we discuss how each partner can be different from the others and each organization do not know the situation faced by the families in another countries. The European dimension asks us to look at the diversity between each partner organization and to deal with it in a useful way. The YAID project highlights the diversity of project team members and the families that in their local context face a difficult situation characterized by isolation and loneliness.
How to involve the families that are not supposed to take part directly in the mobilities activities? How to manage diversity in the field of disabilities? What kind of involvement for the families in the YAID project?
“We are in touch with the families, we see them every day but we are not them. We have engaged but not always successfully. One objectives could be to learn how to better design services becoming closer to the problems of the families” Jamie says.
“Yesterday we're talking about the expectation of the families” Silvia says. Silvia proposes that a methodological objective of the project could be to allow the families to rethink their expectation “to transform their dream in a realistic and useful project day by day”.
We say that one question could be how the families would like to be supported. In this sense a methodological objective can be to learn how to deal with the expectation of families. “So the big question is what are your expectation for your life, what do you want from your live and for your child?” Jamie says. “If you ask this question to me I don’t know” Timoslav says.
It seems not a question that can be resolved by an answer and we convene that the question regards the difficulty of thinking about future with some kind of hope and the request of the families to be helped in facing this issue.
Zana proposes as one possible question to ask what do you expect from your community or what your community do for you. This point seems interesting as the local community can act as a care service provider. Furthermore good relationships within the community can prevent the feelings of being isolated and marginalised from the rest of the society.
At this point Natalija tells us that the day before she has taken notes of some questions she would like to pose to the care service users. The questions regarded the issue of the trust/distrust of the families in front of the care service providers, their daily need, their feeling about letting their children use the public transport, their ideas regarding the kind of activities they would like to arrange for their child and what are their expectations about future.
Natalija’s questions seems crossed by the main issues discussed during the meeting: the distrust, the reliability/unreliability of the enlarged community, the daily problems and the expectations about the future.
We decide to realize the research in a common way posing a general question. We agree is not easy to pose question not introducing our expectations. In this sense a good general question could give the families the possibility to talk specifically about their life in their community, their experiences with project and services for disabilities.
We discuss how to pose a general question can be difficult because the interviewer cannot control what the interviewed person would tell after the question.
At this point Zana asks what kind of intellectual disabilities and what should be the age of the people with intellectual disabilities involved in the interviews.
We highlight that we are not forced to separate families or people with disabilities by the medical diagnosis, age, social condition.
This labels underline how we relate to our daily work separating the mild from the severe, the poor from the rich in the same way we look at the differences from one countries and another in the first day of the meeting.
This kind of differences, on the other hand, could represent a tool to compare the action research data in different cultural context. A tool to highlight issues and different resources to improve the quality of the service we offer. It could be also a way to verify if a labelling process based upon the type of disability, ethnicity, economical condition really identified separated and distinguished “objects”.
In this conclusive part of the kick off meeting we think about what the European dimension can represent for us and for the families. “In my experience in Italy for example Europe represents different things. Europe is the place where you can find everything we don't have in Italy. For example in Italy if you ask someone about the reliability of politics and services you will certainly meet distrust and discontent. In these context Europe could represents an hope for the future and the possibility to achieve your objectives” Felice says.
Briony says that looking around in Europe could be interesting also for the families we are going to interview. They can compare themselves to someone from another culture with similar problems. In this way we start to think about how to organize and use the outcomes of the research in the relationships with the families”. Zana proposes to “record” the basic daily life of a person with intellectual disabilities. Felice adds that's an interesting idea: “quite ethnological”.
“We could contextualize the basic hypothetical life of John a person with intellectual disabilities and then compare how it differs in each country” Jamie says. Furthermore we could enlarge this perspective starting to think how to contextualize in a European dimension the life of Jon and his family. With this ideas the YAID kick off meeting closes.
How to realize a set of criteria for the caring of the relationship with people with intellectual disabilities? This can be an interesting question for us.
“The problem is the disability often have no words. It seems as if disability has to be directly experienced to be understood” Silvia says. “I don’t think is necessary to speak about disability. For disabled person is their natural condition” Zana replies. “Probably we do not need the diagnosis we can just ask to the families and the persons with intellectual disabilities what they would like to do”, Briony says.
This seems an interesting point. Diagnosis, as disability, seems an individual label not facilitating families in talking about their daily issues and problems. At the same time disability seems to represents also a way to look at problem considering disability as naturally existing. On the other hand we can look at disability as particular label that organizes certain type of relationship between different stakeholders such as families, service providers, neighbours, institutions.
“A suspicious relationship is something really common also in Croatia. Probably it's strange to deal with someone offering help” Zana says. We conclude the first day of the Kick Off meeting discussing that “to ask an hand to face problems” seems difficult as if everybody feel to be obligated to be autonomous.
Sunday 15 December 2013 – morning session
In the agenda of the second day we poses the scheduling of the meeting. We decide to realize as a first step tree interviews before the next meeting in Glasgow to explore the ideas of the families and to get in touch with them. We convene that realizing the interviews we have the possibility to verify the significance of the question we posed eventually rearranging it.
Zana proposes to find out a comparison about the situation faced by the families of people with intellectual disability in different countries. We explore our expectation about who we can imagine to involve in the interviews, just the children, the parents or both. In this way we start to think about how to arrange the interview and what kind of families could be engaged in it.“If we interview families too close to us the risk is that people not feeling comfortable will not tell us their thought just saying that everything is OK” Briony says. We decide not to strictly to define a target group and Briony suggests to engage in the interviews families quite strangers to us not directly involved in the service we usually run.
At this point Zana asks “What is our main goal in the project? If our goal is a set of new services or to lobby for better policy? It’s better to define our goal and then to go towards it. We know what the problems of the families, we see them every day but we here in Rome while they are in their home: lonely and isolated”.
Zana poses a complex question about what could represent an outcome of our European partnership. The mind goes to conflicting relationship with the “union” of disability organizations in each country accused for “not directly working with the families”. In this part of the meeting we experience how difficult is to build a useful function working together in a networking project.
In this sense we discuss how each partner can be different from the others and each organization do not know the situation faced by the families in another countries. The European dimension asks us to look at the diversity between each partner organization and to deal with it in a useful way. The YAID project highlights the diversity of project team members and the families that in their local context face a difficult situation characterized by isolation and loneliness.
How to involve the families that are not supposed to take part directly in the mobilities activities? How to manage diversity in the field of disabilities? What kind of involvement for the families in the YAID project?
“We are in touch with the families, we see them every day but we are not them. We have engaged but not always successfully. One objectives could be to learn how to better design services becoming closer to the problems of the families” Jamie says.
“Yesterday we're talking about the expectation of the families” Silvia says. Silvia proposes that a methodological objective of the project could be to allow the families to rethink their expectation “to transform their dream in a realistic and useful project day by day”.
We say that one question could be how the families would like to be supported. In this sense a methodological objective can be to learn how to deal with the expectation of families. “So the big question is what are your expectation for your life, what do you want from your live and for your child?” Jamie says. “If you ask this question to me I don’t know” Timoslav says.
It seems not a question that can be resolved by an answer and we convene that the question regards the difficulty of thinking about future with some kind of hope and the request of the families to be helped in facing this issue.
Zana proposes as one possible question to ask what do you expect from your community or what your community do for you. This point seems interesting as the local community can act as a care service provider. Furthermore good relationships within the community can prevent the feelings of being isolated and marginalised from the rest of the society.
At this point Natalija tells us that the day before she has taken notes of some questions she would like to pose to the care service users. The questions regarded the issue of the trust/distrust of the families in front of the care service providers, their daily need, their feeling about letting their children use the public transport, their ideas regarding the kind of activities they would like to arrange for their child and what are their expectations about future.
We discuss how to pose a general question can be difficult because the interviewer cannot control what the interviewed person would tell after the question.
At this point Zana asks what kind of intellectual disabilities and what should be the age of the people with intellectual disabilities involved in the interviews.
We highlight that we are not forced to separate families or people with disabilities by the medical diagnosis, age, social condition.
This labels underline how we relate to our daily work separating the mild from the severe, the poor from the rich in the same way we look at the differences from one countries and another in the first day of the meeting.
Briony says that looking around in Europe could be interesting also for the families we are going to interview. They can compare themselves to someone from another culture with similar problems. In this way we start to think about how to organize and use the outcomes of the research in the relationships with the families”. Zana proposes to “record” the basic daily life of a person with intellectual disabilities. Felice adds that's an interesting idea: “quite ethnological”.
“We could contextualize the basic hypothetical life of John a person with intellectual disabilities and then compare how it differs in each country” Jamie says. Furthermore we could enlarge this perspective starting to think how to contextualize in a European dimension the life of Jon and his family. With this ideas the YAID kick off meeting closes.
