Research

The realization of an action research aimed to understand the main problems faced within the families of young adult with intellectual disabilities has been a core part of the project. The main aims of the action research has been to develop a set of intervention criteria to set up innovative projects and services. Each organization has realized 15 interviews: a total number of 60 interviews has been realized during the project. The persons involved in the interviews have been mainly family members of persons with intellectual disabilities. Some interviews have involved also the persons with intellectual disabilities individually or together with their parents or relatives.

All the interviews have been audio recorded. Some of the interviews realized by the Croatian partner has been also video recorded. The main part of the interviews has been realized by the members of the project team. The interviews realized by the Scottish partner organization have been realized by social workers not directly involved in the project team. The interviewed persons are mainly clients of the project and services run by the partner organizations. Interviewing the clients of the partner organization have implied also a check of the service users satisfaction regarding how their daily problems are addressed in the services run by the partner organizations. To realize the interviews has been a complex experience for the interviewers. Sometimes the interview has been transformed into a frank conversation that gave the interviewed persons the opportunity to share their problems, their worries and their hopes for the future. Nevertheless, on the other hand, sometimes the interviews has been hard to be proposed and realized: for some parents and relatives wasn't easy to talk and speak about their problems as well as for the interviewers wasn't easy to listen to them getting in touch with their feeling of anguish and desperations. 

In some case the interview has been a surprising experience for the interviewers. As an example in realizing the first pilot of interviews, one of the project team members expressed his astonishment in listening how much the parents of a persons with disability attending his service have to say: “I have recorded for more than one hour and I expected they won’t speak more than two minutes”. Other members of the project team reported that “some issues emerged from the interviews surprised us and we were quite unconscious about needs and aspirations of parents and persons with disabilities”. The members of the project team found useful to realize the interviews in term of achieved knowledge for planning new project and services more targeted on the problems faced within the families of persons with disabilities. The interviews in this sense suggest the importance of considering the whole families and not just the persons with disabilities as the client of the organization working in the field of disability as well as the importance of training the staff to deal with the demands of the families .

During the kick off meeting the partner organizations decided to realize two sets of 3 pilot interviews for each organization to explore the daily problems faced within the family of persons with intellectual disabilities, their experiences and expectations about the project and services for disabilities. For the last set of 9 interviews a set of questions exploring the expectations about the quality of life of the persons with disabilities they are in touch has been prepared. The questions have explored the factors that have contributed to empower the quality of life of the family, the service needed in regards to the role of the interviewed person within the family and the kind of support asked to the municipalities and the public agencies. Listed below we propose the main results of the interviews in each countries.

Scotland

The interviewed persons are all ENABLE Works clients accessing the transition services and the supported employment services. The interviewed persons with intellectual disabilities are from 19 to 33 years old. The interviewed family members are parents and siblings. The parents and siblings involved agreed that expectations and the quality of life in the future will depend on the possibility to achieve a paid job and live independently. Having a job represents the tool to be part of the society in a productive way without being dependent on the care and assistance of the family members. Paid job and independence are intended by the interviewees as the signs of overcoming the problems characterizing the life of the persons with disabilities during the childhood. Problems in achieving the steps taken for granted while growing up in different context such as the school and the family, in fact underline the diversity of the persons with disabilities when compared to their peers as their siblings. “He is so different from his siblings and he feels like he is being left behind in what he will be able to achieve and what he will be able to do” one interviewed mothers says. Paid job represents as well the sign of having entered the adulthood and of the ability to achieve objectives such as live a life as “normal” as possible. “Our ambition for A. is to have a purpose in life, to get a job, have a family, a house of his own- a normal life” another mother says. 

On the other hand to work represents an ambitious objectives while also doing ordinary things , such as travelling, many times become a challenge within a family of a persons with disabilities. Society in fact is seen as a dangerous place for persons with disabilities intended as too trustful and weak : “now he is more independent and can travel on his own, but I worry that he may get into trouble with other people. He is very trusting and people with learning disabilities can be vulnerable to abuse” one parent says. On the other hand parents many times support their sons or daughters in exploring the context where they live in: “If he falls, he falls. “If he gets his clothes dirty, he gets his clothes dirty. It's a learning thing. We have always said to J ‘never hold yourself back from anything” one father says. 

Isolation is a common problem for the persons with disabilities and the other family members. The persons with disabilities find difficult to have friends or to participated in groups and activities with their peers. “He'd do that now if he had a decent friend but there's nobody interested in going with him. He's asked a couple of boys but they don't want to go” one of the interviewed parents says. On the other hand the parents feel to be isolated within their community and struggle with the local authorities seen as distant and not helpful for their problems. Furthermore parents and the other members of the families feel not to be enough considered and supported by the services. : “There isn’t really any support for families- this is the first time anyone has asked our opinion on services...support seemed to finish when he was 18 and there doesn’t seem to be a lot out there for adults” says a mother. “Some social groups for parents in the same situation might have been good when she was younger too, so you can all get together and talk about what you are going through” another mother says. 

In this context emerge the importance of the reliability of care service providers that are requested to provide what we called “navigating services” . In this regard the Scottish interviews show that demand of the families seems not be related to the difficulty for all the family members of persons with intellectual disabilities in paving their own way from childhood to adulthood building projects for the present and the future. .

Italy

The interviewed persons are GAP clients accessing a social agricultural project and other family members of persons with intellectual disabilities belonging to organizations active in the field of disabilities within the area of Rome. The interviewed family members are parents, siblings and cousins of persons with intellectual disabilities. The interviews underline the critical moment represented by the end of school and the lack services for transition to adulthood. During the school the interviewed parents report the difficulty in dealing with “having a different child”: “I’m very angry because even at school my child is treated as "special" and cannot attend some activities like the others” a mother says. A feeling of anger towards the others families and children, perceived as being able to have a “normal life”, emerges incrementing the isolation of the families within their community. During the period of childhood rehabilitative and therapeutic services directed to the persons with disability are delivered: “services have had a really important impact on our life: nowadays we even can't imagine ourselves without it”. On the other hand this kind of services seems not to help the family members recognise their own resources or to be prepared for facing the future after the school: “Sometimes with the therapist you build a dependent relationship. Your son fall and you immediately call your therapist” a mother says.

After the school the relationship with other families with a child with disabilities seems difficult due to a common perception of lack of services and resources: “there are few services open to all so there is a war among the poor peoples to access them" another interviewed parent says. A common problem for the families is the perception of a social isolation and the feeling of loneliness: “where I live, I have no relationships; there are no aggregation centre where to go with my daughter” a mother reports. “Parents loose connection with friends, with relatives...I remember when my daughter was a child, I was ashamed to go to the park and I remained at home” another interviewee says. In this context the family members ask to the municipalities and the care service providers to be helped. “We don't need a questions-answers relationship with the municipalities. We need someone accompanying us, to feel that we are not lonely that we can share our experience” a father says. “Accessible public centre co-ordinating and supporting the families when the school finishes are needed: if not the whole family become disabled” a mother adds.

Furthermore the relationships within the community seems more difficult when the relationships within the family are difficult. In this regard the interviewed family members express a difficulty in understanding each others. This difficulty appears to be related to the crisis and the behaviours of the persons with disabilities “breaking” the norms and the expectations of their parents. “The problem is that my brother doesn't execute the rules and makes mistakes: the only way to give him the rules it's fear and terror”. The behaviours of the disabled person, seen as mistake to cancel, seem not to have a meaning within the family context. The extreme consequence is that the whole life of the family risk to become not interpretable: meaningless. In this regard emerge a problem of violence within the family that make difficult for the family members to think about the meaning of their problems and building some mutual rules to live together. In this regards the interviewed families ask for assistance at home. The interviews suggest that helping the family members in understanding the reasons of the reciprocal behaviours could be an important objective of the services for disabilities. 

Croatia

The interviewed persons are Bubamara clients accessing the day centre service in Vinkovci and the mobile team service. The interviewed family members are persons with intellectual disabilities and their parents. The interviews with the persons with disabilities shows their ambitions, desires and problems. They want to get married, to have children, to be helpful for their family and their community trough a job. “To be a construction worker is not a hard job if you you want to work” a 32 years old man with down syndrome says. “This ring on my hand means that I'm going to marry my girlfriend when her mother decide to let us do it”. “I would like to have a child and a family” his girlfriend says. “I'd like to continue to help my parents at home doing the housework” another girl adds. Furthermore the persons with disabilities ask to be close to their family or to someone emotionally important for them: “before living independently I need to find a partner not to feel lonely at home” one of them says. They ask the possibilities to have the power to make ordinary choice: “I would like to have money and to travel round the world”. s. Sometimes persons with disabilities seems to be happy of perceiving their life as different to a “normal” one: “I think would be really tiring to work all day, I prefer epic poems as I do every day, poems about life in general and about love”. On the other hand some of them seem to suffer for the feeling of being different recriminating against a “blamed past”: “doctors abandoned me. The therapy killed me” a man who faced meningitis during his childhood says. Making friendship and building social relationships emerge as one of the most important desirers of the interviewees. This seems often difficult within the local community. Even if some persons with disabilities, especially in small villages, seems quite respected and welcomed many of the interviewee reported to be isolated: “During the day I go to have a walk, lonely with my dog” a 22 years old girl says. In this context a day care centre can be a big resource for the possibility to make friendship. 

Also the intervened parents identified the activities and services such as the day care as a factor of empowerment of their quality of like. Parents report the difficulties faced during childhood when problems started and the search for a “never achieved cure”: “since he was one years old we went to doctors and magicians but we didn't find a solution for him” a mother says. Parents reported as well that their problems are changing during the time: “with the puberty that is crucial for his pathologies the situation started to get worst and with the war he started to have psychological problems and aggressive attitude” a mother says. Parents generally don't look at residential institutions as a resource to face this kind of problems. The worry for the future after the death of the parents seems to be calmed down thinking that brothers and sisters will substitute them in the role of taking care of the persons with disabilities. At the same time the parents report the ambition for not considering the persons with disabilities just as “burden or as not capable to plead” and the hope for their sons and daughters to “live their life making some decision on their own, participating in the community and maybe getting a job”. On the other hand the parents sometimes seem to risk to underestimate the competences of their children seen vulnerable and incapable :“they are not independent you must always be there for them, she is independent in making problems”. Parents in fact report the fear for their sons or daughter to be in danger while doing ordinary things “not knowing what is wrong and what is right” and the shame for the socially unsuitable behaviours such as wearing dirty clothes or accepting presents from strangers. Regarding the services asked for themselves parents 9 parents upon 15 agreed in considering the personal assistance at home as a key for the prevention of the isolation of the family. Finally personal assistance is seen as the possibilities to have choice and control over the service used. 

Lithuania

The interviewees are clients of “Vilties Akimirka” day care service and participants of the summer camps. The interviewed persons are parents of persons with intellectual disabilities with diverse diagnosis from mental retardation to autism, mainly parents of persons with severe form of mental disability. Parents express the problem of understanding their daughter behaviours and interests changing during the time. To start dealing with a “diverse” child since the birth is reported by the parents an important milestone and a critical step. A feeling of displacement and crisis is reported regarding the childhood: “We did not know what to do with this child”, “my husband was devastated after knowing our child's disability” “It's difficult to understand and become used to the thought that your child is disabled”. At the same time the problems within the family are reported to change during the time. “During growing period her behaviour, her needs began to change; it was more difficult to understand what she was trying to say” a mother says. In particular the interviewed parents stress the request of being helped in communicate with their sons or daughter to understand their behaviours and interests: “She began to be interested in knives, forks, scissors and so on and It was always necessary to watch out and not to leave such items in accessible places”. The request of being helped in dealing with the reciprocal feelings such as fear and worries within the family to become competent in communicating to each other seems to be shared by the interviewed parents: “our daughter understands that she is a disabled person, she anxiously wants to walk, she is worried about it too much, so it is very difficult for us too” a mother says. 

The interviewed parents express a feeling of guiltiness when doing ordinary things difficult to do for the persons with disabilities: “we are no longer able to take care of her, we would like to go somewhere but we do not go for solidarity with our daughter”. In this way the family members start to renounce to attend social events such as going to a restaurant, to a cinema or out for a walk becoming isolated during the time. Within this context the siblings seem to play a big role and seem designed to substitute their parents in the caring role of the persons with disabilities. 

The role of municipalities and care service providers and other members of the local community is considered important since the early childhood to start building a path for the future. . On the other hand Municipalities and other local stakeholders are often perceived as distant and not helpful leaving the families lonely in dealing with their problems. One of mothers says: “until our daughter entered Viltis day care centre, nobody helped us; „It seems that the state is hiding everything, trying to hurt u;, “Nobody wrote us a letter, nobody told us about the benefit we could have.” In other cases the welfare system looks like an evaluating agency that assess the moral stature of the family rather than trying to give an help: “we have passed crossed roads to demonstrate that we are not an asocial family, we are not alcoholic”, - a mother reports. Centres, providers of care services, public institutions seems asked to show their readiness to understand and to pander the specific situation faced by each family: “We would like the day care centre to be opened during the weekend or during the night so that we could leave our son for a few hours or days if needed”, a parent says. A common request from all the interviewed family members is to have services at home at home; To use services at home seems to be seen as a key for providing effective and useful support : “We would like a person with high pedagogical skills come to our house in the week end or in the afternoon hour during the week before we come back from work. It is difficult for our daughter to go to the day care centre 5 days. We highly require people coming to us”, a mother says. Fun, opportunity of conviviality and socialization are reported to be also very important and many of the interviewed parents quoted Viltis summer camp service as a good initiative for their quality of life. Finally the interviews highlight that the family members of persons with disabilities ask for high qualified professionals competent in to working on problems related to communication and relationship within the family and outside the family.

MAIN FINDINGS OF THE RESEARCH

The interviews show that fear, displacement, exclusion, loneliness, guiltiness are significant emotional problems faced within the families of persons with intellectual disabilities. Familiy members express the difficulty in experiencing new form of relationships with their sons or daughter with disabilities and to take part with fun and satisfaction to the social life within their community. They ask for experiencing different ways of being together to feel less “chained” to each other and to build an alternative to the feeling of reciprocal obligation experienced in their daily life. Services, such as summer camps and day centres are perceived to be useful to let the persons with disabilities go out from home, to get in touch t with other members of their community and to have fun. On the other hand these kind of services seems to facilitate the family members getting in touch with professionals and asking them for help to deal with their problems if it is needed. In this sense the interviews confirm the idea that organizing moments of fun and socialization can be a key tool to improve the effectiveness of the services. Furthermore the realized interviews the family members ask for flexibility to the project and services: they want the project and services to be built for their specific problems. A context where to talk about their own daily problems are required. The interviews show that parents of persons with disabilities and other family members want to participate in the planning of the services to improve their quality. Furthermore in the interviews realized in all the partner country the parents express the request of closeness and reliability to care service providers and local stakeholders.

The interviews in fact show that the families are afraid to be left alone and look for reference points to get oriented. Public institution and municipalities implied in the providing of social services are seen as distant not really interested in the problems of the families of the persons with disabilities in all the partner countries. Parents and siblings report problems in understanding how to face and understand several lifelong events: since the discovery/diagnosis of the disability to the transition to adulthood. In this regard the setting up of “case management” services addressed to help the family walking through their lives paving their own path for the future can be a key tool to improve their quality of life. . Parents report the difficulty in understanding the persons with disabilities’ behaviours and interests changing during the time. This difficulty appears to be shared also by others members of the local community such us teachers, friends, relatives, neighbours that are often afraid due to the incomprehension of unexpected, unusual or aggressive behaviours of persons. . In this regard the research suggests the importance of setting up services aimed to “translate” the meaning of the reciprocal feeling and behaviours within the families and within the different contexts attended by the persons with intellectual disabilities.

Finally the interviews show the desirers and problems of the person with intellectual disabilities. Making friendship and building social relationships are perceived as the most important issues by the interviewed persons. The interviewees report the importance of being close to their relatives and of finding a partner to live with. Furthermore the interviews shows that persons with intellectual disabilities want to have a job or to take part in useful/productive activities.

Useful/productive activities are seen as an opportunity to overturn the role of eternally assisted persons. Doing domestic activities to help their parents, or riding an ambulance, as an example, give them the chance to be useful for their family and community.