The final meeting of YAID project was held in Glasgow between the 30 th of April and 1th of May 2015. 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 Aidas Makstutis from Viltis association; James Rutherford, Linda Barrett and Briony Williamson from Enable Scotland.
First day of the meeting:
The first day of the meeting has been entirely dedicated to the visit to the Darlings Coffee Shop, a social enterprise managed by Enable works in Arbroath, a city situated near Dundee in the north of Scotland. The visit starts with a meeting at the Glasgow station where we get a 3 hours train to Arbroath. When we arrive to Arbroath station a five minutes walk bring us to the Darling’s cafe located in the centre of the city. In the coffee shop we meet Keri Johnson and Louise Jones, two Enable Works Transition coordinators. With them the chef of the Darlings, Kevin, welcome us.
Jamie Rutherford introduces the Darlings that works as training centre for 40 persons with disabilities per year and is addressed to youngsters coming from schools and colleges of Arbroath and the surrounding city of Angus and Dundee. The trainees pass trough a 13 weeks training course. The first part of the training is done in small groups of 10 people exploring the expectations about the work and about the different skills needed. After this part of the training the trainees go to a one to one 5 weeks practice experience in the working environment of the coffee shop. The practice experience is monitored by Keri and Louise that then help the trainees in finding a job somewhere else. Not every one find a job, more or less the 50 %, and if they trainees don’t find a job they can come back redoing a part of the training course or they can be supported by Enable Scotland under another program. For Jamie Rutherford many of the difficulties are related to the business being located in small town where it is difficult to find a job and there is more competition with normal people to be employed.
Dana Migaliova asks about the starting up of the social enterprise. Jamie Rutherford explains that Enable has planned it since long time and after receiving a million pound from the lottery decides to start. “The starting up of the Darlings has needed a lot of consultations with local traders and a two years planning process”. “If we could come back we will set the service in another place”. “In this region there is an higher unemployment rate and the Darlings in a good week earns 4000 pound and it cost 3500 pounds a week” Jamie Rutherford says.
The staff working at the Darlings is made up of a chef, Kevin, that is also the manager of the business, two full time coffee shop workers, a number of part time workers, two Enable Scotland transition coordinators and one person responsible for the administration of the coffee shop. “We have some extra money from the lottery for another year but after that it will be probably difficult to maintain the business”. “We have no special compensation by the state and the financial condition of our business are the same of the normal ones” Jamie Rutherford says frankly.
At this point the project team members and Keri and Louise present themselves.
“We responsible for the training course focused on employment, we are mostly concentrated on hospitality and our work is to explore the working interests of the young persons accessing the service”. “We mostly work to build employability skills, make the CV of the young people, explain to them the meaning of work as many of them never works before, don’t know what to expect”. “We also take care of the social aspects related to work and we can say that the work we do is very much tailored to the individuals”. “It is very interesting for us to see the trainees going along the induction process”. “At the beginning they are very shy but after they become very confident”. “It is difficult to see them leaving but we help them to find a paid job and they get a certificate of readiness to work at the end of the course” they say.
“I do the same as Keri expect that I run a different program that is called the employability found” Louise says. “It a short course made of different stages potentially going along for 6 week”. “The first stage is on the social and emotional barriers, communication skills, motivations skills, team work”. “As a group we are also realizing a community impact project using a poster in the community area to notice information about drugs and alcohol all around Angus” says.
“The main outcome of the training course is a qualification of readiness for work achieved by the trainees in 4 stage” Kery says. “Enable runs 3 stage and subcontract the stage 4 to another providers: the forth is dedicated to learn how to prepare an application for a job” she adds.
“I mostly work on practical aspect related to the work to be done in the coffee shop” Kevin the chef says. “The trainees learn how to get an order, how to deal with a customer, how to make an Americano or a Cappuccino, how to stay in the kitchen”. “Personally I’m happy to support persons with disabilities and it is good to see them developing and getting confident” he adds.
Keri at this point tells us that the Darlings cooperates with schools, employment centre and other agencies. Jamie Rutherford says that this is very important for the persons with disabilities to maintain their job. He says that the problems faced while having a job are the most difficult to manage for Enable. “Often persons with disability don’t want to face the emerging problems because they are scared for the possibilities to be discriminated by the other workers”. “For this reason many people often want to change the job not to feel different and they don’t want to ask an help” Jamie Rutherford says. “The 30 % of the persons we support loose their job during the first six months therefore it is a big issue: people that loose their job loose their confidence and become disengaged” he adds.
At this point Keri says that who found a job can come to the Darlings on Friday and talk about the possible related difficulties in the job club.
Dana Migaliova asks if the Darlings cooperates with other local stake holders. Keri replies that they cooperate mostly with “Skills Development Scotland”, a governmental agency, the disability advisors of the local job centers and supported employment workers within the local authorities of Dundee and Angus.
At this point Felice Bisogni asks about the relationship of the Darlings transition coordinators with the families. Keri replies that they speak mostly with mums and if the person has a more severe form of disability the connection with the families should be more close. “Furthermore in Scotland if you don’t work you have money from the government and the families are worried about loosing their benefits therefore the benefits can represent a big barrier for the employment of persons with disabilities” Keri says.
Felice Bisogni says that getting in touch with the Scottish team he understood that the employment is very important for the families but is also considered as a risk.
In this regard Kery agrees that the parents are really concern as often for them getting a job means to explore something new and unknown. Keri adds that parents are usually very protective, because for themselves to have a job means to get in touch wit the “big bad world” and this can be very scaring.
With a lunch in the Darlings the visit of the service finishes and after a visit of the city we come back to Glasgow by train.
Second day of the meeting:
“It can be too late: it is necessary not only to support service for the persons with id but for all the families. It is necessary to organize the service in the framework of the daily problems” Dana Migaliova states.
“In this regard our research show that all the families ask for support at home” Felice Bisogni says.
“Yes because to arrange the service at home is very difficult for the staff and for us”. “Furthermore the services are considered very expensive in Lithuania and we are discussing how to substitute the parents in the caring function” Natalija Olesova replies.
In this way some questions about the criteria to provide personal assistance services and the competences required to organize services to help the families with intellectual disability at home arise.
After that Zana Skejo Skoric proposes to read together and comments the set of criteria of intervention included in the final report. One of the criteria states that the problem of the families are not fixed and need to be analyzed carefully every time we set up a service for a specific family.
Natalija Olesova agrees that this criterion is very important as it is impossible to fulfill all the needs of the families. In this regard we discuss about the satisfaction of the families towards the services. Felice Bisogni proposes the hypothesis that the dissatisfaction of the families can be related the feeling of the parents of not being involved in the building of the services.
Zana Skejo Skoric disagrees with the idea of engaging the parents in the building of the services. “Persons with disabilities don’t only need services that their families approve. They are fighting for their independence it is tricky for me to involve the parents in the building of the services” she says.
Felice Bisogni insists that is crucial to help the families in seeing the persons with disabilities desires and that is very difficult to organize effective services against the parents will. “It is very important to agree with the families about the objectives of the services also due to the fact that the parents has a lot power over their sons or daughter”. “I think this has been experienced by each of us within his own family” he adds.
“Of course but I think that a lot of parents of people with disability aren’t happy with any kind of service because their child is not healthy; this is a deep frustration that is not directly caused by the services” Zana Skejo Skoric says.
“In the many cases the parents are the responsible of their children, they live a different live and it takes a lot of time to be a little happy and satisfied but I never blames the families. Families need to be supported on this level” Dana Migaliova replies.
“This is very interesting: ach member of the families should be engaged in the building of the services but we know that the parents are scared about independence and the future of their children” Jamie Rutheford intervenes. “We have experiences in with the parents do not agree about a job ant the opinion of the person with disability doesn’t matter. So I think it is necessary to reflect about this” he adds.
Felice Bisogni at this point proposes some considerations about the GAP motivation in proposing the YAID project. “On the one hand we propose the YAID project because of the specificity of our organization that is to organize services addressed to the families and not just to the person with disabilities and because of these kind of services are usually less developed” he says. “On the other hand it is because we understood that the relationship between the care service providers and the families is often very complex and need a critical reflection” he continues. “As an example why the families are so scared about future and therefore so protecting and controlling? In which histories? In relation to which kind of experiences?” he asks.
In this regard Felice Bisogni proposes the hypothesis that the families share the illusion of the disability to the cured by the services and that the failure of this illusion organizes a strong dissatisfaction towards the services. “I think that a reflection about the ends pursued by the services it is needed” he adds.
In this way it continues a discussion on the criteria listed in the draft of the Yaid final report. In particular we discuss about the importance of organizing socialization activities as an alternative to the therapeutic activities and as way to move the disabilities out of an medical environment.
Similarly another criterion stresses the importance of organizing productive activities such as the ones featuring the social enterprises or a working environment as way to build an alternative to provide therapy. The importance of these kind activities seems related to the possibility for the person with disabilities and the family members to have a social role different from the one of care givers and eternally assisted persons. At this point Jamie Rutherford starts to draft on a paper a scheme of the criteria and their internal connections.
“We think that the engagement of families in not the first criteria to follow in organizing services” Zana Skejo Skoric says. “For these reasons we have interviewed also the persons with disabilities rather than just the families”. “We have problems with the expectation of the parents that are often very low and they have no ambitions and this is why we think the person with disabilities is the key”. “The most important thing is self confidence and often parents aren’t able to develop the self confidence of their children with disabilities due to their law expectation” she adds.
A discussion started on this with Dana Migaliova saying that the persons with disability in some case are very different from the persons that can do many things on their own. For this reason she proposes that it is very important to find an agreement with the families about the objectives of the interventiond. At this point Jamie Rutherford intervenes in the discussion highlighting the differences between his son and his nephew with disability: the family of his nephew needs support. “I think it is important question to work out what is the best way organize services…if the point is to focus on the child or to the family” he says.
“Maybe Zana is saying that the focus in the individual” Linda Barrett says. “Yea but the individual is made by where he live, where he born with whom he grow up and stay in touch” Felice Bisogni replies.
“I think that when the person have a severe form of disability the family is most important: also cause they can stay 8 hours in the day care centre but the persons stay with the families” Dana Migaliova says.
This discussion represents a crucial moment within the YAID project. In this regard Felice Bisogni proposes to consider this discussion as “the reason of the starting of the project that at the end come out”. “When we say families it seems that we are thinking just to the parents and we are the firsts not seeing the persons with disability and their interaction with their parents, brothers and sisters” he adds. “When we reduce the families just to the parents we are trapped in a problem of power” Felice Bisogni continues. “On the contrary we are saying that the family is a system of interactions between the different persons” he adds.
In this regard Zana Skejo Skoric talks about the difficulty she faces in dealing with parents with very low expectations towards their children. We discuss about the frustration of the parents for having a children different from their dreams.
“I think the problems is that it’s harder to work with the parents and the whole family rather than just with the person with disability”. “It is important to help the persons with disability in finding their own recourses but if that persons in their home are always looked as without resources how it is difficult to be effective in promoting the development of the persons we support” Silvia Policelli says. “We have to be trained to do it, we have to be trained not to react” Stefano Pirrotta says. “We are working in a tree years intervention and it is very difficult to change something in the dynamics of this family” Felice Bisogni says. “However at the beginning they distrust us and now little by little they started to ask help for something”. “I think that the expectations of the care services providers towards the service they run should be rethought in some cases” he adds.
At this point Dana Migaliova proposes a “scheme of the crisis of the families” trough the time.
“When the child born the families don’t know what to do how and how to behave. After that some time passes and terrible feelings emerges. Then it comes out a feeling of rejection by the families and the society towards having a different child. One consequences is a strong feeling of guiltiness” Dana Migaliova says. “Then parents starts to think to be iperbad parents; the next stage is to use service with some hope for the future to be better but then a new crisis arrives: the crisis are as a circle for the families” Natalija Olesova says.
Felice Bisogni proposes the hypothesis of this feeling to be related think to “a continuous passage from illusions and disillusions”. “I think would be important to help the parents find out realistic possibilities leaving their dream”. “For us as care service providers is very important to deal with the expectations of parents to build some realistic objectives to be pursued” Stefano Pirrotta says.
Another important issue discussed in the last part of the meeting regards the meaning that the ends of the services have in different context. As an example to working inclusion has not the same meaning in each place and in this sense we agree about the importance of not to take for granted what we think can be good for the service users.
“It is also important to build the competences of the stakeholders dealing with the persons with disability in different contexts” Stefano Pirrotta says. This bring as to think that the expectations towards the persons with disability are related to the cultural representations shared in each context. In this sense we agree that the culture of the disability characterizing the different social context is changing during the time. In this sense to arrange and support the persons with disability in doing productive activities can be considered as a tool to change the cultural representation of persons with disability as unproductive and a burden for the society and this can help also the parents in developing their idea about the resources and the possibilities of their children.
After that we discuss how to use the criteria and the final report for the dissemination of the project results. We agree to provide the final report to the employees that within the partner organization are engaged in the realization of the services for disability. Finally we agree each partners to translate the final report in their mother tongue and to make accessible the site with all the project results by the end of the project foreseen for the 31 of July 2015. The last meeting of the YAID project finishes.
