ENABLE SCOTLAND PRESENTATION AND DISCUSSION
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Skejo-Skoric, Tomislav Velìc, Maria Crnjac from Bubamara association; Natalija Olesova, Dana Migaliova, Andrius Sleivys from Viltis association; James Rutherford, Linda Barrett and Briony Williamson from Enable Scotland.
We meet at Argyle street in the very centre of Glasgow: the statues of two titans supports the entrance of the ancient building where Enable office is located.
At the second floor after a cup of black coffee the meeting starts.
Jamie introduces Enable organization. Enable campaigns for social change in the welfare framework and realizes services for people with mental disabilities to live independently. The Scottish organization runs different training services for youngsters focused on different topics as citizenship, alcohol, drug abuse or how to use social media. Enable is composed by 5 regional teams located in different parts of Scotland and one youth team working all across Scotland.
Furthermore Enable runs services for the transition to employment engaging people with learning disability, “profiling their skills and motivation to match it with a job”. “The reason why Enable is really interested in the YAID project- Jamie says- is transition because nobody ask children what they want to do when they grow up and we want to change this”.
Training projects are an important part of the work on the Jamie's team within the Enable Scotland branch called Enable works. Enable works in fact runs social enterprise projects, regular business as a coffee shop or a plant nursery, where people with mental disabilities are trained for 2 months. Another important part of Enable works activity are the school projects.
Briony is the transition coordinator of the “Setting up project”. The project started in 2009 and involves 80 schools about transition to work. Students from 14 to 17 years are supported in leaving school as in Scotland is usual to remain many years in college for people with learning disability. Finally “personalization” is one of the big welfare change is actually going on in Scotland. Personalization started in the 1990 when Enable campaigned for people having the possibility to get control over their money, “to have control over their life”.
In 2012 the individual budget's reform became statutory for people with mental disabilities and their family.
Regarding this point Dana, the president of Viltis, asks Jamie: “Are you facing problems about the legal capacity of people with mental disabilities? who is going to choose how to use money?”
This seems an important issue: to get control over their money implies a change from the idea of people with mental disabilities as “unfit to plead”.
Linda tells also that the personalization process is facing many problems as several parents think that the reform will imply cuts and limitations of the project and services for mental disabilities they are used. “For example many day care centre are closing with this reform of the welfare system -Linda adds- and many parents are afraid for their sons because they are afraid about where their sons would go”.
In this way we start to understand how “the closing of the structures” continues to pose complex issues to care service providers and families.
For Zana in Croatia this seems a very actual problem as the political leadership pushes for the closing of “all the big institutions”[1] without allocating the necessary resources to set up alternative services. Zana focuses the discussion on the problems Bubamara faces “working with people with severe disabilities, aggressive attitude or mental illness”.
We ask ourselves how to deal with violence, aggressiveness and dangerousness: emerges a linkage between security, “the institutions” and the demand of new services.
“When our members come to us- Zana says- it means that hat day they are OK that day thanks to their therapy. If they are not OK they remain with their family the parents ask for consultation about how to put them in an institution. Other children, brothers and sisters can have consequences”. “There are no good option for them” Timoslav adds.
Dana suggests that one possibilities is to organize support services at home. “We do not run yet that kind of service, but we would like to do in the future. For example in the 3 interviews we will see tomorrow parents ask for it” Felice says.
“We are fighting to have home assistance for people and parents with mental health problems. We have services just for the physical disabilities and it is very difficult to organize services for mental disabilities. We must set the criteria for that kind of assistance” Zana says.
Emerge an important question regarding the deinstitutionalization process in the different countries.
How to help family deal with severe mental disabilities and aggressive attitude at home? This can be an important question to answer within the YAID project.
“For example- Zana continues- Tomislav's brother has very complex disability and aggressive attitude and Tomislav has to look all the day if his brother is going to do something bad to his child or his mother. They fight all days and all night longs but his mother do not want to put Tomislav brother in institution”. “Because the institutions are not human- Tomislav adds- but I have to thinks every minute of the day what will happen if my brother want to kill my mother or my child. Some days or some week he is good but we never know what can happen. Every second we must be careful”. “There are also some place I visit in the North, for example in Denmark, that are good nice, gentle prison. Sometimes it may be necessary” Dana says searching for some solutions. In this way the first discussion session ends.
VISIT AT HOLYBROOK SPECIAL SCHOOL + ENCOUNTING GHERY AND CRYSTHINE
After this first part of the meeting we move our selves to Holybrook special school, in the south of Glasgow, where Christopher, one of the Enable Scotland transition coordinators, is waiting for us. By taxi we passes the Clyde's river, we skirts the railways and the popular residential area with the typical working classes buildings and we arrives to the school. Entering the school we have a look of the large refectory, the notice boards, the showcase with the cups and medals of the recent winning of the school sports teams. Christopher guides us in a visit of the institute. Passing the corridor we arrive in the backyard of the institute from where we can see at a little distance an “ordinary school”. Holybrook is in fact a special school, an educative institution that in Scotland represents an alternative device to the “integrated classrooms”: its a dedicated and separated place for diagnosed students.
During this brief visit we have the possibility to have a look of the Holybrook students. For some of them, for example the ones with down or autism syndrome, diversity seems something visible at the first sight. For some others instead is not easy to understand the reasons why they attend a special school. Students seems to have different ages from 14 years old to more than 18 years old: a confirm of the difficulty in the the transition process Jamie and his team underlined. On the other hand its interesting for foreign eyes to see a school remaining a referring point, a place where to stay, for the youngsters and their family while in many others European countries this is not allowed.
We met the school headmaster in a laboratory classrooms with paper, panels and colours everywhere on the walls. After a few minutes Christopher arrives with some of his pupils proposing us a game to join: he asks us to write down on a paper “a plan of our dreams for the future”. It's an unexpected proposal. After a while we find ourselves in the running starting to play: we understand that it's not so easy to define “the dream for your future”.
The main dreams of the YAID project team members are “to improve professional skills and the work condition”, “to have enough money for an apartment in the city centre”, “to have a Ferrari”, “to have another dog”, “to marry”, “to make a family”. On the other hand, between us there is who wants an “house in the wood to pick mushrooms”, who wants to “became a fisherman” or “to go surfing in a sunny island”.
Regarding the dreams of the students, one of them wants “to work in a multinational fishing company in the centre of Glasgow to be able to go working abroad ”. Furthermore many of them want “to travel abroad” and all of them want “a chicken”.
A strange “dream” shared by the students; what does it mean?
In the afternoon at Enable office we encounter with Ghery, an Enable Scotland employment coordinator and Crystine: one of the girl he supports in her employment.
Nowadays Crystine with her sunny smile works in a shop after being trained to sell dresses within one the Enable services. We pass a few talking with Crystine posing questions regarding her work while she answers our question and curiosity . After a brief talk Ghery proposes us to start a game to improve our ability to work in a team. With mush mellows and spaghetti we start a funny and agonist match: in ten minutes, divided in four team we try to build the highest tower we can.
INTERVIEWS'S FINDINGS AND DISCUSSION
We dedicate the second day of the meeting to the discussion of the first interviews carried out by the partner organizations.ENABLE'S INTERVIEWS
Jamie starts exposing the findings of the 3 interviews carried out by Enable. The interviewees are the parents of 3 persons from 18 to 23 years old that have used or still use Enable services. The interviewers are 2 Enable Scotland coordinator in touch with the families as users of the services.Jamie underlines 5 topic crossing the interviews: “the independence”, “the friendship”, “the right support at the right time”, “to have ordinary choice”, “the fear for the future”.
Independence, seems to be understood by the parents as the possibility of supporting their sons in achieving to their objectives not losing the hope in the possibility to achieve something difficult: “if he falls he falls if he get his clothes dirty, he get his clothes dirty. We always said to j never hold your self back from anything. If you can't do anything at a particular moment never give up. You can try in a few days time”.
Furthermore independence, one of the main ends of the Enable services, seems an objective the families agree if is possible to rely upon the support of the Enable care service providers for the future: this seems one important request the family poses to the care service providers.
This issue seems linked to second issue that Jamie underlines: “friendship”. The parents denounce the difficulty in building social relationship within their local community. A difficulty that seems to lead the parents and the persons with disabilities to consider the service and the coordinator as a very important referring point for socialization. “There is nobody” is a recursive phrase highlighting a strong feeling of loneliness and isolation. “People clock you!” parents says.
In the second interview the parents of a girl, attending an Enable socialization service during the week, talk about the difficulty in finding friends to go out in the week end. Regarding this point Jamie adds that “social interaction risk to be limited as services closes on the week end”. Furthermore, in the third interview, the parents, asked about the service for the future, identify as a guarantee the reliability of the coordinator in case of eventual future problems.
In comparison with the past “when there was just big institutions outside” for this family a reliable social worker seems a very important resource.
Another issue Jamie identifies is “the right support at the right time”. In the first interview the parents disagree with “that statistics that thinks: You have got a disabilities? you have learning disabilities? Well, this is the road you take! No I do not want to take that road”.
In this way they express the idea that their son has its own opinion and he is able to choose. At the same time the whole family as “services users” seems to ask to be actively involved in building “the right support at the right time”: the third themes Jamie identifies.
Considering the the third interview, the parents stress the importance, in the past, of a social worker helping them in “trying to get their son diagnosed not to get lost in the system”. “The family have a really important relationship with this lady Mavis talking with social work and with school helping parents. But she find another job and she left: services staff changes but life doesn’t change” Jamie says.
Regarding this point some parents require to be guided by diagnosis and technical knowledge while some other parents criticize similar devices as a prescribed “road” incapable of considering the subjectivity of the person with mental disabilities and of the whole family.
All these families seem to ask for a reliable relationship with professionals capable to take on the problems helping them in building linkages with different agencies and institutions. A relationship able to go on during the time.
At this point we try to focus what kind of relationship between the interviewers and the interviewees emerge from Enable interviews. “I thought the parents want to speak a lot and this is interesting because usually nobody ask the family what they think about disability services” Silvia says. “It's seems also that the questions are mostly posed to the person with disabilities while the answers arrives from the parents as if the persons with disability have no power to speak for themselves” Felice adds. “Yes the parents speak much more than the child in the interviews” Jamie says.
Regarding this point we ask our selves how to interview the families about “the needs of the whole family and not just regards the child”.
Dana underlines that “also in Lithuania it is difficult for the parents to trust other people outside the family. This is what we learn in the summer camp, at the beginning they do not think other people can be really interested in building a relationship with their sons”.
Dana continues saying that in Lithuania there are 3 different generations of parents: “the first, the older generation, seems very much grateful just to have something, the second starts to look for quality, the third, the younger one, used to have service since the early intervention is very active and want to use all the services at a very high level”.
Dana, in other terms, talks about different ways to be a care service users.
BUBAMARA'S INTERVIEWS
It's now the turn of the findings of the first 3 interviews realized in Croatia by Bubamara's team. Bubamara decides to interview its members: 3 young adult with diverse diagnoses. Two of them Cristina, with mild intellectual disabilities, and Tomagoy, with Down Syndrome, are a couple and they would like to marry each others to live on their own.This seems a further declination of we term “independence”: they want to be “independent” together as couple. Tomagoy speaks about politics and he is very critical about politicians asking power to make “ordinary choice”. Cristina says she want to have a child and a family.
In a similar way, in the third interview, the interviewed girl expresses the desire to find “the love of her life” and her fear to loose it. When Zana, the interviewer, asked her if she wants to live independently she answer that before she needs “a partner not to feel lonely at home”. She says she would like to have money and to travel round the world.
Interviewer: “Do you want to work?
Interviewee: “O no. I'm very slowly I need much more time to do things and I think would be really tiring to work all day”.
Interviewer: “And what would you like to do?”
Interviewee: To write epic poems as I do everyday.
Interviewer: “About what?”
Interviewee: “About life in general, about love”
At this point Natalija notices that the interviewed guys seems to ask to be independent from their families. “Cristina for example stay all the days of the week at the association until 9 PM and we are supposed to close the office at 7 PM. Every day they can come to use but in the morning they have to stay at home and there the situation is much more different” Zana answers.
For Zana is important to ask for better laws but it is difficult to propose a critical point of view to politicians that have the power to decide who is going to be financed to run projects and services: “we have to be quiet and obedient”. “However Timoslav, our president, “marries” Tomagoy and Cristina in Bubamara and we all participate in the ceremony” Zana adds.
Regarding this point Stefano highlights that in Bubamara people with mental disabilities seem welcomed by gentle people able to get in touch with their subjectivity. For them Bubamara association seems to represents a place capable to welcome wishes and ideas that in the community have to be hidden. Stefano notices also that one of the interviewed girl denounce a bad relationship with their local community. “Tomagoy, for example, nowadays had a good relationship with Bubamara's workers but in the past it has happened that he came back from the city naked and drunk because of people making fun of him” Zana says.
“It seems that lot of this guys want to travel as the Scottish students we met at school. What's the meaning of this request? Why do they want to travel?” Felice asks. “We are use to go with them to the see with the parents or with personal assistant” Zana says. “But they seems also asking to travel on their own” Felice adds. “It is a problem of ability to take train?” Jamie asks.
“They are not allowed by the law for mentally disabled persons to travel on their own. If policemen see them they bring them back to their home” Timoslav says.
Regarding the parents point of view Zana refers they are afraid about what would happen after their death and actually they are much more worried because the big institution are going to close: “they have fear of the institutions and fear of new services they do not know”. “They say to us: you will take care of our sons! But we have no services and we have no guarantees for the future”.
Here emerges an important point about how the care service providers can take this kind of request by the families.
“Furthermore we have problems with the independent living model and the group apartment because parents, by the law, have to let the property of their home to the service providers organizations if they want to set up such a service”. “However it is a general problem as the new social law that Croatian government has approved is based just upon the de institutionalization process. Politicians seems to be obsessed by this topic” Zana says. “As if they want to close all the institutions in one night” Tomislav says.
The de institutionalization process seems the most important issue the Croatian partner and the families with mental health problems are actually facing. An issue that also other countries has faced in the past and we agree that could be useful to use the YAID project to understand how to set services to help this families to face the change.
The Lithuanian partner exposes the findings of the first 3 realized interviews.
Andreys interviewed 3 families attending the day care centre “Vilties Akimrka” in witch he works. In the first interviews the parents express the problem of understanding their daughter behaviours and interests that are changing during the time. They ask an help about communication to face this complex issue. Another problem the parents regards how to be helped in taking care of their child. “We found very convenient to let our daughter with her sister as she leaves very close to us but it is not a solution! Instead could be great to let their daughter in the day care center several times for months or for the night to sleep as we do not trust to let our daughter with assistants we do not know her behavior” the parents says.
We discuss the kind of demand this family is posing to the day care centre. Natalia says the parents ask to the day care centre to organize respire care services. Dana says she doesn't like to mix different kind of services. “But they trust to this day care center and Andreys so they ask to the center the services they need” Natalija says.
In the second interview Margherita's parents remember the displacement they feel when their child has born. “We do not know what to do with this child. It seems that the state is hiding us everything, trying to hurt us. Nobody write us a letter, nobody tell us about the benefit we can have. We find all the information we have talking with other parents” the parents say. We have pass cross to demonstrate we are not a social family, we are not alcoholic, we have done what we have done by our own initiative. We did not look from help from the outside”.
In this way emerge a complex relationship with the stare and the care service providers that seems have been distant from this family when they needed. A relationship that risks to lead the parents thinking that no help from the outside is useful. Furthermore these parents look at welfare system as an evaluating agency that decide the moral stature of the family rather than trying to help it.
The parents express a feeling of guiltiness in relation to their daughter: “we are no longer able to take care of Margherita we would like to go somewhere but we do not go for solidarity with our daughter”. Instead summer camp on the Baltic sea shore seems to represent for this family an important context to find fun and relationships with other people as an alternative of guiltiness and reciprocal obligation they experienced at home.
In the third interviews the parents of Camilla underline how, until they enter Viltis day care center, nobody helped them. “A problem to find people who can stay with Camilla in the evening or in the week end. We would like a person with special pedagogical skills that came to our house in the week end or in the afternoon hour during the week before we come back from works. It is difficult for Camilla to go to the day care center 5 days. We highly require people coming to us”.
Natalija underlines how again the families ask to the day care center to organize respired care services. Furthermore respired care services are required to be organized at home.
How to deal with the requests of the families? Is it possible to develop the traditional services finding a way to welcome the demands the families poses?
We start to discuss the way Viltis have organized the interviews. Felice found interesting the question “what are the problem you face when your child born?” “In this way the interview become for the family an opportunity to speak about their history with services and to rethink that history” Felice says.
“This is really an interesting way to realize an interview. It is in its self a service. Your interview the importance of listening, just listening the family, much more than posing questions” Felice adds.
We discuss how this can be considered a coherent way to give an answer to the demand the family poses to the care service welcoming the specificity of their problems as an alternative to the prescription of a taken for granted “road” for disability's problems.
Natalija tells Andrews was really surprised after the first interview. He knows that a 20/30 minutes interview with the parents was needed and he was afraid to tell “the parents has talked for more 1 hour”. “It's true: parents wants to talk, wants to express their thought, wants to communicate” Natalija says.
This seems an important finding of this part of the research and a part of the “compass for a new approach to the family system”: to organize services starting from what the families ask to the care service providers and to analyzing the meaning of their request represent an alternative to the offering of “prepackaged” services.
This perspective could build a linkage between the problems posed by the “personalization process” and the problems posed by the “de institutionalization process”. In particular the common perspective is to develop a new way to look at the whole families as customers of the projects and services for mental disabilities and as an active co-constructor of the projects and services itself .
Viltis seems to have done some steps in this direction. For example they set up a “Council of users”. “Was very interesting at the beginning to listen that often they disagree with us because they have other opinion” Dana says. “There are 6 visitors representing the interested of the 22 visitors. In each meeting of the Council the elected visitors discuss the needs and the requirements of each visitors and when the meeting starts Andreys make the minutes and they vote the proposal”. Another surprising thing Dana refers is that families with intellectual disabilities start to ask the possibilities to invite friends enjoy the summer camps: “it was strange for I said to them: look they ma help us!”.
“What we learn – Dana continues- is that when you organize services or support for people with intellectual disabilities you have always to look at the family if you want to have good results for the persons. You have to involve the family otherwise the services are not useful”.
“We highly require home care assistance. Home care assistance is important for the autonomy of the family” the parents say.
The word autonomy seems to have for this family the same meaning of “independence”: a product of the relationship you can build with “the person with disability”.
In the second interview Luciana, the mother of 12 years old child with autism, talk about a conflictual relationship with the Municipality and other political institution denouncing a lack of services when the child with autism start to grow up. “We are fighting against the institutions and it seems that they are against us”. “Our children just disappear when they grow up as adult autistic persons cannot exist: the attention of services to our children just finish” the mother says. Even with the school the situation seems very complex and emerge the difficulty in dealing with the feeling of being "different": families claim the right to be different and at the same time want to be normal like everyone feeling to be stigmatized. “I’m very angry because even at school my child is treated as "special" and cannot attend some activities” the mother says.
Furthermore Luciana asks for the possibility to give feedbacks regards the services she uses. “What can be useful for my son can be not useful for another one”. “However the services are useful because an autistic boy should always be followed: you never know what can happens". In this way Luciana again suggests to contextualize the services considering the specificity of her family. On the other hand the unpredictability of her son behaviours as we have seen in the other partner interviews is confirmed as on of the main problem this mother ask to be helped.
In the third interview the parents of a seven years old child with autism talk about a strict relationship with the therapist. The services proposes a technical knowledge that the family start to apply to the child since he born. In this way the technical knowledge seems to become the most important tool to get in touch with their son. “Services have had a really important impact on our life: nowadays we even can't imagine ourselves without it” the mother says.
On the other hand the mother again express the difficulty in dealing with the unexpected crisis of the child that seems lived as big danger for the whole family: “It was a continuous stress that impedes the daily life because of the emotional crises”. “The life our family is in danger when the unexpected crisis happen. “Now we understood a way to control our emotions to give him tools to communicate in a different way”. In this sense crisis seems linked to the way in witch emotion can be expressed in this family. Furthermore the technical knowledge seems so important for this family because is seen a the only to feel that the unexpected crisis can be taken under control.
Dangerousness, disabilities and services seems in a recursive way strictly interconnected as we have seen in all the interviews.
We start discuss the interviews and Dana ask to the Gap team the reason why families search in such a strong way this strange therapy.
I do know exactly. It came in my mind the sentence of the parents interview “If you have not being diagnosed you feel like lost in the system”. Furthermore the way in witch people deal with diversity is often violent and take the forms of the moral condemnation. In therapeutic knowledge and technics the parents find the illusion of the certainty they feel is missing in their unpredictable daily life.
“The problem is that at one time you start to think that your child is different and you feel guilty about this and you start to do a lot of strange therapeutic things and you just loose your time” Dana says.“And is difficult to have the right support at the right time as Jamie said before£.
“It similar to Lithuanian parents choosing not to travel for solidarity with their daughter cannot as if they feel guilty about differences.” The school time allow the illusion of equality between people with intellectual disability and normality and after when go out from school everything can.
“Usually parents need time to accept new situations and need to learn how to live different live because life will be different! The family –Dana continues- has to face problems as all the society and have much less possibility to solve the problems. Our professional responsibility is to find a way how to help the family making the family stronger”.
“Always try to be in touch with the family members as you said regarding your mother and your child” Dana says.
“Nobody work with my mother nobody work with other mother or father” Timoslav says.
“In Lithuania we work with family a lot and it I much more difficult to work with them” Dana says.
“Yes. It is much more difficult than with members (disabled persons) because the acceptance is a rare thing. Just a few parents accept that. They are always frustrated thinking they face an injustice” Zana says concluding the discussion session.
After the discussion session we met one the young adult enable Scotland working in a dress shop.
The girl really nice and smiling tell somethings about her job experience and after a brief talk Gary propose us a game:
Jamie asks what would be the best way to go on with the interviews: continuing with diverse strategies or setting up a common questionnaires?
We find interesting to continue interviewing parents and persons with disabilities as they are not usually asked about their ideas and feeling about services. Seems also interesting to continue exploring the different interests and issue of the partner organization about how to use the project and the research.
We underline as for the family seems not easy to speak about their problems in the relationship with their children. In this sense seems interesting the question posed regards the relationship between the parents and their sons with disabilities.
Different questions can be used as a tool starting from the objectives we would like to achieve thought the project. “For example in this first interview we decide not to interview people that works directly with us. But considering Andreys interviews, who directly works with the interviewed families, we noticed that have been highlighted several interesting things” Felice says.
“It can be useful also to use the interviews to think about the relationship between service and families to understand how to set up service for the family and for parents” Sylvia adds.
“In Lithuania we have done a long discussion about it and we agree that services for the family goes trough the services for the disabled persons and the family members take support not directly but indirectly” Dana says.
“I think that part of the compass we have planned to realize during the YAID project could be focused of our understanding the way we are used to get in touch with families to find out some strategies to implement services for the different family members. Considering the family as the customer of the services for the disabled persons the services can change can improve”. Felice says.
“A further step could be to involve not just parents but also other members as brothers. They too fell the pressure and the problems and they are always at the side. They also often feel guilty because they are healthy or they feel lonely and abandoned” Zana says.
“Another step in the project could be to find a way to share what we are saying here in this project with the families. For example many interviewed parents denounce a lack of informations and the need to search it”Felice says. “Also to have a feedback” Zana adds.
“In our experience -Dana intervenes- the parents look at information and feelings as separated blocks. Parents, as an example, go to the doctor to have informations but do not have good feelings towards doctors because they are the first persons that the families meet in the first year the child born”.
“Parents are used to speak about disabilities using the words of recommendation, the words of doctors, the words of technical knowledges. We can use a blog or a site to put on the paper and disseminate their words, the words of the family fostering the idea that the families itself can build an useful way to speak and think about disabilities problem. Why do not upload for example Bubamara's video?” Felice says.
“Parents have a lot of complex experiences during the all process since the diagnosis and then entering school and leaving the school. For example I remember a story a mother of a child with disability tell me: the mother goes for a visit to the doctor and she was a doctor too. The doctor ask to the mother but How did, although you are a doctor such a ting can be happened to you.
“Also in our direct experience the relationship with between families and doctors is complex. The families participating in our green house project, as an example, always fulfil the doctor's prescriptions. But on the other hand they seems really scared to get in touch with the Mental Health Centre asking an help for their problems” Felice says.
“Because Mental Health Centre it means to have mental health problems, depressions or some other diseases and family doesn't want to be stigmatized. To face this problem we have adopted the Canadian model of family support centre” Dana says.
“In many cases is really difficult to differentiate between mental disabilities and mental illness. For example if you live in an house whit a person with challenging behaviour or aggressive attitude the distinction seems to blur away. In this way again we come to the problems security and unpredictability poses to the care service providers in the setting up of project and services.
We decide to continue to welcome differents way to realize interview as we have done for the interviews discussed in the meeting planning to realize 3 more interviews for the next meeting and the meeting closed.
The de institutionalization process seems the most important issue the Croatian partner and the families with mental health problems are actually facing. An issue that also other countries has faced in the past and we agree that could be useful to use the YAID project to understand how to set services to help this families to face the change.
VILTIS'S INTERVIEWS
Andreys interviewed 3 families attending the day care centre “Vilties Akimrka” in witch he works. In the first interviews the parents express the problem of understanding their daughter behaviours and interests that are changing during the time. They ask an help about communication to face this complex issue. Another problem the parents regards how to be helped in taking care of their child. “We found very convenient to let our daughter with her sister as she leaves very close to us but it is not a solution! Instead could be great to let their daughter in the day care center several times for months or for the night to sleep as we do not trust to let our daughter with assistants we do not know her behavior” the parents says.
We discuss the kind of demand this family is posing to the day care centre. Natalia says the parents ask to the day care centre to organize respire care services. Dana says she doesn't like to mix different kind of services. “But they trust to this day care center and Andreys so they ask to the center the services they need” Natalija says.
In the second interview Margherita's parents remember the displacement they feel when their child has born. “We do not know what to do with this child. It seems that the state is hiding us everything, trying to hurt us. Nobody write us a letter, nobody tell us about the benefit we can have. We find all the information we have talking with other parents” the parents say. We have pass cross to demonstrate we are not a social family, we are not alcoholic, we have done what we have done by our own initiative. We did not look from help from the outside”.
In this way emerge a complex relationship with the stare and the care service providers that seems have been distant from this family when they needed. A relationship that risks to lead the parents thinking that no help from the outside is useful. Furthermore these parents look at welfare system as an evaluating agency that decide the moral stature of the family rather than trying to help it.
The parents express a feeling of guiltiness in relation to their daughter: “we are no longer able to take care of Margherita we would like to go somewhere but we do not go for solidarity with our daughter”. Instead summer camp on the Baltic sea shore seems to represent for this family an important context to find fun and relationships with other people as an alternative of guiltiness and reciprocal obligation they experienced at home.
In the third interviews the parents of Camilla underline how, until they enter Viltis day care center, nobody helped them. “A problem to find people who can stay with Camilla in the evening or in the week end. We would like a person with special pedagogical skills that came to our house in the week end or in the afternoon hour during the week before we come back from works. It is difficult for Camilla to go to the day care center 5 days. We highly require people coming to us”.
Natalija underlines how again the families ask to the day care center to organize respired care services. Furthermore respired care services are required to be organized at home.
How to deal with the requests of the families? Is it possible to develop the traditional services finding a way to welcome the demands the families poses?
“This is really an interesting way to realize an interview. It is in its self a service. Your interview the importance of listening, just listening the family, much more than posing questions” Felice adds.
We discuss how this can be considered a coherent way to give an answer to the demand the family poses to the care service welcoming the specificity of their problems as an alternative to the prescription of a taken for granted “road” for disability's problems.
Natalija tells Andrews was really surprised after the first interview. He knows that a 20/30 minutes interview with the parents was needed and he was afraid to tell “the parents has talked for more 1 hour”. “It's true: parents wants to talk, wants to express their thought, wants to communicate” Natalija says.
This seems an important finding of this part of the research and a part of the “compass for a new approach to the family system”: to organize services starting from what the families ask to the care service providers and to analyzing the meaning of their request represent an alternative to the offering of “prepackaged” services.
This perspective could build a linkage between the problems posed by the “personalization process” and the problems posed by the “de institutionalization process”. In particular the common perspective is to develop a new way to look at the whole families as customers of the projects and services for mental disabilities and as an active co-constructor of the projects and services itself .
Viltis seems to have done some steps in this direction. For example they set up a “Council of users”. “Was very interesting at the beginning to listen that often they disagree with us because they have other opinion” Dana says. “There are 6 visitors representing the interested of the 22 visitors. In each meeting of the Council the elected visitors discuss the needs and the requirements of each visitors and when the meeting starts Andreys make the minutes and they vote the proposal”. Another surprising thing Dana refers is that families with intellectual disabilities start to ask the possibilities to invite friends enjoy the summer camps: “it was strange for I said to them: look they ma help us!”.
“What we learn – Dana continues- is that when you organize services or support for people with intellectual disabilities you have always to look at the family if you want to have good results for the persons. You have to involve the family otherwise the services are not useful”.
APS GAP'S INTERVIEWS
Gap team realizes 3 interviews to parents of youngster with intellectual disability that aren't direct users of GAP services. In the first interview emerge the difficult situation faced by the family when the school finishes with a growing isolation investing the whole families. The parents try to build a common enterprise with other families that doesn't start up because of the reciprocal distrust.“We highly require home care assistance. Home care assistance is important for the autonomy of the family” the parents say.
The word autonomy seems to have for this family the same meaning of “independence”: a product of the relationship you can build with “the person with disability”.
In the second interview Luciana, the mother of 12 years old child with autism, talk about a conflictual relationship with the Municipality and other political institution denouncing a lack of services when the child with autism start to grow up. “We are fighting against the institutions and it seems that they are against us”. “Our children just disappear when they grow up as adult autistic persons cannot exist: the attention of services to our children just finish” the mother says. Even with the school the situation seems very complex and emerge the difficulty in dealing with the feeling of being "different": families claim the right to be different and at the same time want to be normal like everyone feeling to be stigmatized. “I’m very angry because even at school my child is treated as "special" and cannot attend some activities” the mother says.
Furthermore Luciana asks for the possibility to give feedbacks regards the services she uses. “What can be useful for my son can be not useful for another one”. “However the services are useful because an autistic boy should always be followed: you never know what can happens". In this way Luciana again suggests to contextualize the services considering the specificity of her family. On the other hand the unpredictability of her son behaviours as we have seen in the other partner interviews is confirmed as on of the main problem this mother ask to be helped.
In the third interview the parents of a seven years old child with autism talk about a strict relationship with the therapist. The services proposes a technical knowledge that the family start to apply to the child since he born. In this way the technical knowledge seems to become the most important tool to get in touch with their son. “Services have had a really important impact on our life: nowadays we even can't imagine ourselves without it” the mother says.
On the other hand the mother again express the difficulty in dealing with the unexpected crisis of the child that seems lived as big danger for the whole family: “It was a continuous stress that impedes the daily life because of the emotional crises”. “The life our family is in danger when the unexpected crisis happen. “Now we understood a way to control our emotions to give him tools to communicate in a different way”. In this sense crisis seems linked to the way in witch emotion can be expressed in this family. Furthermore the technical knowledge seems so important for this family because is seen a the only to feel that the unexpected crisis can be taken under control.
Dangerousness, disabilities and services seems in a recursive way strictly interconnected as we have seen in all the interviews.
We start discuss the interviews and Dana ask to the Gap team the reason why families search in such a strong way this strange therapy.
I do know exactly. It came in my mind the sentence of the parents interview “If you have not being diagnosed you feel like lost in the system”. Furthermore the way in witch people deal with diversity is often violent and take the forms of the moral condemnation. In therapeutic knowledge and technics the parents find the illusion of the certainty they feel is missing in their unpredictable daily life.
“The problem is that at one time you start to think that your child is different and you feel guilty about this and you start to do a lot of strange therapeutic things and you just loose your time” Dana says.“And is difficult to have the right support at the right time as Jamie said before£.
“It similar to Lithuanian parents choosing not to travel for solidarity with their daughter cannot as if they feel guilty about differences.” The school time allow the illusion of equality between people with intellectual disability and normality and after when go out from school everything can.
“Usually parents need time to accept new situations and need to learn how to live different live because life will be different! The family –Dana continues- has to face problems as all the society and have much less possibility to solve the problems. Our professional responsibility is to find a way how to help the family making the family stronger”.
“Always try to be in touch with the family members as you said regarding your mother and your child” Dana says.
“Nobody work with my mother nobody work with other mother or father” Timoslav says.
“In Lithuania we work with family a lot and it I much more difficult to work with them” Dana says.
“Yes. It is much more difficult than with members (disabled persons) because the acceptance is a rare thing. Just a few parents accept that. They are always frustrated thinking they face an injustice” Zana says concluding the discussion session.
After the discussion session we met one the young adult enable Scotland working in a dress shop.
The girl really nice and smiling tell somethings about her job experience and after a brief talk Gary propose us a game:
THE NEXT STEPS
In the last part of the meeting we discuss how to go on with the project. All the partners have organized the first tree interview in different way. Some interviews involves the person with disabilities individually or together with their parents while some other instead have involved just parents.Jamie asks what would be the best way to go on with the interviews: continuing with diverse strategies or setting up a common questionnaires?
We find interesting to continue interviewing parents and persons with disabilities as they are not usually asked about their ideas and feeling about services. Seems also interesting to continue exploring the different interests and issue of the partner organization about how to use the project and the research.
We underline as for the family seems not easy to speak about their problems in the relationship with their children. In this sense seems interesting the question posed regards the relationship between the parents and their sons with disabilities.
Different questions can be used as a tool starting from the objectives we would like to achieve thought the project. “For example in this first interview we decide not to interview people that works directly with us. But considering Andreys interviews, who directly works with the interviewed families, we noticed that have been highlighted several interesting things” Felice says.
“It can be useful also to use the interviews to think about the relationship between service and families to understand how to set up service for the family and for parents” Sylvia adds.
“In Lithuania we have done a long discussion about it and we agree that services for the family goes trough the services for the disabled persons and the family members take support not directly but indirectly” Dana says.
“I think that part of the compass we have planned to realize during the YAID project could be focused of our understanding the way we are used to get in touch with families to find out some strategies to implement services for the different family members. Considering the family as the customer of the services for the disabled persons the services can change can improve”. Felice says.
“A further step could be to involve not just parents but also other members as brothers. They too fell the pressure and the problems and they are always at the side. They also often feel guilty because they are healthy or they feel lonely and abandoned” Zana says.
“Another step in the project could be to find a way to share what we are saying here in this project with the families. For example many interviewed parents denounce a lack of informations and the need to search it”Felice says. “Also to have a feedback” Zana adds.
“In our experience -Dana intervenes- the parents look at information and feelings as separated blocks. Parents, as an example, go to the doctor to have informations but do not have good feelings towards doctors because they are the first persons that the families meet in the first year the child born”.
“Parents are used to speak about disabilities using the words of recommendation, the words of doctors, the words of technical knowledges. We can use a blog or a site to put on the paper and disseminate their words, the words of the family fostering the idea that the families itself can build an useful way to speak and think about disabilities problem. Why do not upload for example Bubamara's video?” Felice says.
“Parents have a lot of complex experiences during the all process since the diagnosis and then entering school and leaving the school. For example I remember a story a mother of a child with disability tell me: the mother goes for a visit to the doctor and she was a doctor too. The doctor ask to the mother but How did, although you are a doctor such a ting can be happened to you.
“Also in our direct experience the relationship with between families and doctors is complex. The families participating in our green house project, as an example, always fulfil the doctor's prescriptions. But on the other hand they seems really scared to get in touch with the Mental Health Centre asking an help for their problems” Felice says.
“Because Mental Health Centre it means to have mental health problems, depressions or some other diseases and family doesn't want to be stigmatized. To face this problem we have adopted the Canadian model of family support centre” Dana says.
“In many cases is really difficult to differentiate between mental disabilities and mental illness. For example if you live in an house whit a person with challenging behaviour or aggressive attitude the distinction seems to blur away. In this way again we come to the problems security and unpredictability poses to the care service providers in the setting up of project and services.
We decide to continue to welcome differents way to realize interview as we have done for the interviews discussed in the meeting planning to realize 3 more interviews for the next meeting and the meeting closed.
[1] Some forms of “institution”
intended as structures with an entrance, walls and a roof seems continuing to
be required by the families as a guarantee of safety. In this sense the worries
expressed by the Croatian families
waiting for the closing of the “total institution” such as “psychiatric
hospital” or “insane asylums” seems similar to the worries expressed by the
Scottish families attending the closing of many day care centre as a
consequence of the “personalization” reform of the welfare.
