Quality of Life and Professional Orientation for People with Intellectual Disabilities in Northern Italy: A Case Study
The concept of quality of life is receiving more attention as a tool for evaluating policies and practices aimed at people with disabilities. This case study describes the process of professional inclusion of Giulia, a girl with intellectual disabilities, over the last three years of her attendance at a professional school in Northern Italy and the impact that this experience had on her quality of life and on the quality of life of the people who took part in this project. This research intends to: describe the three-year individualised process that leads to the professional inclusion of a girl with intellectual disabilities in a restaurant; highlight the benefits deriving from work for both oneself and one’s work colleagues; emphasise synergies and strategies used in this experience. The paper ends with an analysis of the factors that can favour a positive experience and which can be a starting-point for other, similar experiences.
Keywords: Quality of life, Life project, Supported employment, Intellectual disability, Inclusion
The concept of quality of life (hereafter QOL) is receiving increasing attention as a tool for evaluating the policies and practices implemented to promote the well-being of individuals (Balboni et al., 2013). This construct is defined with reference to social, cultural, economic, environmental and relational aspects that contribute to improve the living conditions of individuals (Bigby & Beadle-Brown, 2018; Castro et al., 2017; Chao, 2018). There are different models of QOL (see, for example, Felce and Perry, 1995; Cummins, 2005) but there seems to be agreement with regard to some conceptual principles (Schalock et al., 2002): the multidimensional nature of QOL, the presence of subjective and objective components,, the influence of different factors, its dynamic nature and the awareness that this is a broader concept than that of health (Tillman et al., 2018; Totsika et al., 2017). QOL is defined with reference to a series of dimensions which, according to Hughes and colleagues, (1995) are: psychological well-being and personal satisfaction; social relations; study and employment; physical and material well-being; self-determination, autonomy and choice; ability to make decisions; personal competence; community adaptation and the possibility of living independently; integration and inclusion in the community; social acceptance, role and social status; adaptation; identity and belonging; personal development and self-realisation; quality of the residential, learning and living environment; learning opportunities throughout life; free time; standardisation and accessibility; some demographic and social aspects; some personal characteristics; responsibility and support received from social services.
Measuring QOL in the Field of Intellectual Disabilities
In the field of intellectual disabilities (hereafter ID), the most widely used model was made by Schalock and colleagues (2010) and emphasises the importance of domains (defined as the set of factors that make up personal well-being) and indicators (considered as perceptions, behaviours or specific conditions that reflect the well-being of a person). This model provides eight domains that refer to three factors: well-being (physical, material, emotional); independence (personal development, self-determination); social participation (interpersonal relationships, social inclusion, rights). Lombardi et al., (2016) describe the different domains as follows:
• Physical well-being: being in good health, which derives from elements such as good nutrition, healthy lifestyle, care received, ability to control pain and stress;
• Material well-being: financial status, work, housing and any possessions;
• Emotional well-being: sense of satisfaction with oneself and with one’s life, positive mood, perception of a pleasant relationship with oneself and with the world;
• Self-determination: ability and degree of satisfaction with one’s ability to make choices to make choices, express one’s own preferences, take advantage of the opportunities that the environment offers based on personal desires and goals;
• Personal development: satisfaction and ability to assert one’s own autonomy in all contexts and for the entire life span;
• Interpersonal relationships: enjoying connecting and interacting with family members, friends and acquaintances;
• Social inclusion: feeling part of a group and a community, exercising social roles and satisfying one’s own living environment, taking full advantage of the resources it offers;
• Rights and empowerment: being guaranteed and enjoying the benefits of the protection enjoyed by everyone as a human being, thanks to the existence and respect of appropriate laws.
QOL is usually measured using some scales (such as Cummins, 1997; Schalock and Keith 1994; Claes et al., 2010). The use of these tools presents notable elements of controversy particularly for people with disabilities, such as the relationship between objective and subjective indicators, ways of involving the individual with intellectual disabilities and opportunities to include/access the opinions of family members (Balboni et al., 2013). Despite these problems, all the areas described contribute to defining the life projects of people with intellectual disabilities.
The Life Projects of People with ID
The life project is a system composed of multiple procedures, recommendations and indications that aims to promote and change the lives of people with intellectual disabilities and develop collaborative action programmes to achieve personal goals in the context of an inclusive life in the community, of recognition and respect for the right to full citizenship, in a positive social and relational climate, supporting and facilitating knowledge and competence and attributing roles, values and social functions to the person (Palissera et al., 2018). The perspective of the life project requires creating a network, and working to create links and opportunities for communication between distinct entities (be they people, bodies or resources), but which can converge towards shared action. The centre of the project is the subject and his/her family (Kramer & Schwartz, 2018). The school then plays a fundamental role. This, in fact, has as its primary task the global development of students, accompanies them during the first part of their life span and allows them to enter society and acquire a social role (Kramer et al., 2018; Samuel et al., 2018). In Italy, an Individualised Educational Plan (EIP) is drawn up for each student, which becomes the basis on which to build a wider life project that requires a mutually advantageous exchange between the actions of family members, institutions, professionals and members of the local community. Finally, the community is involved in the construction of the life project, understood as both the network of formal services that help the subject, and the set of more informal relationships that exist within the contexts he or she lives in (Ruzzante, 2018). The perspective of the life project requires dialogue with potential futures, imagining the individual as an adult and, as much as possible, an autonomous one. Through the life project we try to create in the present the conditions for the future (García-Grau et al., 2018).
Transition from School to Employment for People With ID
Professional employment becomes one of the key indicators of QOL and can bring about a series of benefits both for the wellbeing of the individual and for society (Sheppard-Jones et al., 2018). When we talk about autonomy and growth we cannot think that it does not pass through the work that is the basis of the organisation of society. For people with intellectual disabilities it is essential to build projects that accompany young people through the transition from the world of education to that of employment. In Italy, targeted projects named ‘Personalised Process’ are foreseen that allow students with disabilities to experiment with their skills in different workplaces while they are still in school. These are personal projects, not just work placement projects, but which also prepare them for their role in a work environment (Jacobs et al., 2018) and this implies, according to Wheman et al., (2018): accepting the compromise between subjective needs and adaptation requests, responding to expectations of the role and establishing relations of prosociality. These projects can work if two needs are met: the job satisfaction of the person and their efficiency in the workplace. It would be a mistake, in fact, to think that the subject can do a job well that does not satisfy him or her or is efficient in an environment that is not suitable for them. In these cases, there is the risk of creating an insertion based on welfare forms and that the person can settle into a situation that causes dissatisfaction. The starting-point must always be how the subject feels, what they aspire to according to their vision of the world, looking for the best way to achieve it with them (Mitchell et al., 2018). It is important to take into consideration what has been achieved during the course of the school career, within the various services and in the previous experiences of the individual. All this is followed by specific assessment activities that should aim to: analyse the actual opportunities to make choices that the person has, taking into account the limitations, of the person by reason of the limitations imposed by his impairments and disability and, sometimes, also by the prejudices present in his living environment; highlighting the strengths, functional abilities and capacities, cognitive, physical and emotional assets and the analysis of potentials useful for learning skills to be used for the development of a profession. Understanding a person’s potential is fundamental, as it allows us to better define the trajectory to be developed (Luecking et al., 2018). Subsequently, we can move on to the analysis of the training and working environments, which represents the reference scenario for constructing training paths that can be adapted to that subject. It is necessary to have a realistic picture of what the territory offers, what the market requires, how it can be effectively influenced so as not to create unrealistic expectations in the subject, and offers that are not really productive for the business context. This is also the phase in the definition of the subject’s knowledge, skills and availability that is linked to motivations, interests and attitudes. The third phase is support for the choice, which concerns aspects such as the type of work, existing conditions, necessary training and remuneration. The last phase, that of the planning for work adaptation, is linked to a series of the future worker’s characteristics that are not directly related to the work itself, but are indispensable for maintaining it. These characteristics are defined as behavioural skills (such as punctuality), social and personal capacities (emotional regulation) the ability to work (to understand the key concepts related to the type of work) (Riesen & Jameson, 2018).
QOL is measured through scales that evaluate only some aspects of subject’s lives. These tools, however, hardly grasp how the experience in reality is not only individual, but is lived with other people and is influenced by them. This research intends to:
• Describe the three-year individualised process that leads to the professional inclusion of a girl with intellectual disabilities in a restaurant;
• Highlight the benefits deriving from work for both oneself and one’s work colleagues;
• Emphasise synergies and strategies that favour positive experiences that can be replicated within different contexts.
This qualitative study was guided by a single-case study. This case study was chosen for the positive outcome of the experience. In this way it was possible to describe and analyze the factors that contributed to this positive outcome. A case study research is characterized as an approach “that facilitates exploration of a phenomenon within its context using a variety of data sources.” A case study is “an intensive, holistic description and analysis of a bounded phenomenon such as a program, an institution, a person, a process, or a social unit.” (Baxter & Jack 2008: 544). The case study’ s characteristics are: particularistic (focusing on particular situation, event, program, or phenomenon); descriptive (yielding a rich, thick description of the phenomenon under study); and heuristic (illuminating the reader’s understanding of phenomenon under study) (Yazan, 2015). Case studies are intensive analyses and descriptions of a single unit or system bounded by space and time. Through case studies, it is possible to gain in - depth understanding of situations and meaning for those involved. Researcher identifies topic or questions of interest, determines appropriate unit to represent it, and defines what is known based on careful analysis of multiple sources of information about the case. Research process is defined by systematic series of steps designed to provide careful analysis of the case (Hancock & Algozzine, 2016).
The research was carried out with the permission of all people involved; for example, people with disabilities, families, and representatives of the services. The data collected during the research were treated on a confidential basis. The anonymity of participants have been protected throughout the research process and thereafter in any future published work. The results come from a precise and detailed analysis of the collected materials. The answers of the interviews were not taken out of context and small parts of observation were not been discussed without putting them in the appropriate context.
Semi-structured used in interviews and focus groups with all the actors involved in the project (girl with disability, her parents, the educator who accompanies her at school, the social worker) and direct observation. As Noor (2008) noted: the choice of semistructured interview allowed to better understand the perspective of the interviewees and offered sufficient flexibility to approach different respondents differently while still covering the same areas of data collection. The interviews were tape - recorded to secure an accurate account of the conversations and avoid loosing data since not everything can be written down during interviews.
The main questions of the interviews include: well being derived from work activity, importance of the role of each actor in the construction of the experience and type of supports offered to people with disability. Focus group discussion is a way to elicit multiple perspective on a given topic and is used to capture data on the attitudes of the different actors involved in the research. This method drives research through openness, which is about receiving multiple perspectives about the meaning of truth in situations where the observer cannot be separated from the phenomenon. The focus groups allowed to share the different opinions. In particular, we discussed: the decision-making procedures, the elements of strength and criticality of the project, the main elements emerged from the analysis of the interviews and from the observations and the elements that define the success of the experience (Hyett et al., 2014). Participant observation is where the researcher observed phenomena of interest in the environment studied to draw information which was not obtainable from other methods. What had been observed by the researcher was related to the strategies and accommodations used during the activities. Observation generated insight and better understanding on the phenomenon under studied (Hancock & Algozzine, 2016). The decision to combine the direct observation of activities with collecting the points of view of all the actors enables the triangulation of the data and denotes the will to give voice to all of the subjects involved and to bring out the different points of view.
Data analysis is “the process of making sense out of the data which involves consolidating, reducing, and interpreting what people have said and what the researcher has seen and read – it is the process of making meaning” (Hancock & Algozzine, 2016). The collected data were analyzed using an interpretative phenomenological approach (IPA) aimed at exploring in detail the participants’ views on their experiences. IPA can be used to analyze data in order to develop thick descriptions (i.e. not just behavior, but context as well) that may help to shed light on human experience. An IPA researcher must approach their data with two topics. The first aim is to try to understand the participants’ world and opinion. The second aim is to develop a more overtly interpretative analysis, which positions the initial ‘‘description’’ in relation to a wider cultural, social, and theoretical context. This second-order account aims to provide a conceptual and critical commentary upon the participants’ personal ‘‘sensemaking’’ activities. The first step involved a repeated reading of each transcript, then identifying, and finally writing down all the interesting and significant elements that emerge from the data. The second step was to identify patterns of recurring content (abstraction process) and organization of the patterns in emerging themes (from the comments to the issues). Two independent raters conducted analysis. The two raters coded the data independently and then met to compare analyses. Any discrepancies were resolved through discussion. The themes were not selected on the basis of their frequency, but their meaning and their relevance and similarities and differences were highlighted between groups of participants. Then data were organized into thematic categories in order to capture the meaning of the experience. Finally, the last step was the identification of the relationship between the issues identified. Some themes are grouped, other categories become superordinate (Smith & Osborn, 2003). Two aspects emerged with great clarity: the process and the impact of this experience on the life of the subjects.
In the first part of the results I described in detail the case. The purpose of the detailed description was to exemplify the way in which the data were analyzed. In the second part, I have stressed the result of a comparison that aimed to discern similar and different features among the different point of view in order to identify the elements and strategies that can promote a positive experience.
Description of the Process
The project was carried out with Giulia (all names were changed), a girl with an intellectual disability, in the period between September 2015 and June 2018, the time when she finished her studies at a professional school in Northern Italy. The research was undertaken with the understanding and written consent of each participant. Giulia lives in a small town in Northern Italy with her mum Roberta (48 years old), her dad Vincenzo (52 years old) and her sister Federica (23 years old). Roberta is a kindergarten teacher; she only works in the morning and she spends the afternoon with Giulia. Vincenzo is a computer technician; he has a small individual company. Roberta is a undergraduate student and she actually lives in a different city. As evidenced by the functional diagnosis written by the Neuropsychiatry Service: Giulia is a girl with Down Syndrome with a moderate level of intellectual disability (IQ 50). She has had two heart surgeries but now her health conditions are good. She has visual problems especially when there are stairs and she uses glasses. She takes care of her personal hygiene and dresses herself. She moves independently and uses public transport. She knows how to use money but she has problems with the rest. For this she uses the calculator. At school she follows a individualised school planning with simplifications and reductions of the program. She has attention problems and she needs a break between one activity and another. Giulia has good cognitive and comprehension skills especially if the language is simple and concrete. She has more difficulty if the language is abstract. She has an excellent short- and long-term memory. She has a good motion skills but her execution times are long. On the other hand, in the mathematical sphere there are more critical issues, above all linked to the sphere of logic.
In the kitchen and bar laboratories she moves autonomously, even though the teachers are worried that she could get hurt, so they do not allow her to approach the stoves. Relationship management is more difficult. Especially when she struggles with a task, or is afraid not to be able to complete the task required, it is difficult for her to ask for help and she tends to get stuck and close in on herself, in a mutism that can even last for hours. The presentation of the project is divided into the three years during which Giulia worked in different places.
From September 2015 to June 2016
Giulia has always shown a great passion for food, she states, helping her mother in the kitchen and often preparing lunches, snacks and dinners for her friends. Having reached the second year of professional school, the school proposes that, like all the other students, she take a training course in a workplace context. During the planning stages, her parents, the teachers, the educator who accompanies her at school, the social worker and the contact person from the Neuropsychiatry department participate alongside Giulia. All decisions are made by mutual agreement, involving all actors. The first place identified for the project is the canteen of a kindergarten. The features that make this environment ideal are: proximity to her place of residence and the possibility of reaching it using public transportation; the small size (60 children, 4 teachers and two cooks); family management: the presence of two cooks, one of whom already knows Giulia, who are directly responsible for the structure. Attendance is scheduled for one day per week: Tuesdays, from 9.00am to 1.00pm. Giulia is supported by the two cooks: Giusi, who assigns tasks to Giulia and is her point of reference, and the educator, Stefania, who accompanies and supports her in carrying out the required tasks.
The day is divided into seven blocks that are repeated:
• Attendance check: Giulia enters the different classes to ask teachers for the number of children present, to be communicated to the cooks;
• Distribution of the mid-morning snack: she prepares the trays and peels the fruit to be delivered to each class;
• Preparation of the dishes: she prepares the vegetables and supports the cook in cooking the first and second courses;
• Accommodation in the dining room: she loads the cart, sets the tables with crockery, bread and jugs for water;
• Service: she helps the cook with the distribution of dishes to children, paying attention also to filling the pitchers with water;
• Room tidy-up: Giulia retrieves her trolley, clears and arranges the tables, loads the dishwasher and cleans the cooker;
• Lunch with colleagues: the last operation of the day is lunch with colleagues and the compilation of the daily activity diary.
From September 2016 to 2017
The experience at the kindergarten ended positively, so much so that the team decided to repeat it the following school year for one day a week, but without Stefania’s presence. Giulia’s potential led the team to choose a new, more challenging environment. The second place chosen for the project is a large restaurant, selected for: its large size (280 guests, covered per day, 3 chefs, and 4 waiters) with more sustained work rhythms and an increase in relationships and sensitivity on the part of the owner to the issues of disability.Attendance is initially scheduled for one day a week: Wednesday, from 9.00 am to 2.30 pm. In the months of December and March/April, Giulia also goes to the restaurant on the other days of the week. Giulia is again supported by Stefania and the assistant chef Dimitri, who assigns tasks to her and is her point of reference within the organisation.
Within this context, the routines are:
• Preparation of the side dishes: Giulia cleans, cuts, seasons the various vegetables and places them in the appropriate containers;
• Preparation of cold dishes: (such as cold cuts and cheeses), arranged on a large table, always available to customers;
• Cooking on the grill: Giulia then prepares the bruschetta, grilled meat and vegetables, to be left available to customers in the buffet area;
• Support in cooking food: only after completing her other tasks, Giulia assists the cooks in the preparation of dishes, but without approaching the stove;
• Use of the fryer: during lunchtime, Giulia checks that the container for French fries is always full and, when necessary, operates the fryer;
• Composition of the dishes: when the customers arrive, Giulia serves at the tables;
• Lunch with colleagues: after the flow of customers, the cooks and waiters eat together before tidying up the dining room. Giulia, having finished her meal, fills in the diary and goes home.
From September 2017 to June 2018
The experience at the restaurant reveals a lot of potential but also some problems. The team decides, for the last year of school, to identify a new establishment to build on the earlier experience at the kindergarten. The place chosen is a medium-sized farm (150 people per day, 1 chef, and 4 waiters) and family-run, with a owner (and cook) sensitive to the issues of disability. The attendance remains unchanged from the previous school year: Wednesday, from 9.00 to 2.30pm. In this case, too, for some months of the year, Giulia goes to the restaurant on the remaining days as well. Davide, the owner and chef, is Giulia’s point of reference. Initially, Giulia is accompanied by Stefania. The routines of the day are:
• Preparation of the buffet of side dishes: cleaning and seasoning vegetables for the buffet;
• Support in cooking food: Giulia helps the cook in the kitchen, with duties of increasing responsibility during the various stages of cooking food, up to cooking completely autonomously;
• Composition of the dishes: with the arrival of the customers, Giulia serves at the tables;
• Lunch with colleagues before going home.
Stefania’s presence becomes less necessary and, from March onwards, Giulia works independently. Davide expresses his desire to expand the menu of the restaurant with dishes proposed by Giulia. Giulia welcomes this with concern, but also with enthusiasm, and chooses pizzoccheri and panna cotta which, judged very tasty by her colleagues, are included in the farm’s menu. In June, Giulia is hired with a permanent contract. Davide justifies his choice by recognising the importance of the work for Giulia, but also the added value that she brings to the organisation.
Theme 1: The Elements of Well-being
After presenting the path Giulia took, it is interesting to focus on the elements that define Giulia’s QOL. A first element is physical and emotional well being:
“Giulia learns quickly, has good skills, but must feel welcomed and understood, knowing that she can make mistakes, then she gets involved and the results are seen. If satisfied, the expression on her face is unmistakable, the look says it all” (Giusi, tutor)
It is evident the satisfaction when Giulia completes a task correctly, when she receives a compliment or overcomes a fear by asking her colleagues for help. Both family members and colleagues declare that all emotions are recognisable on her face. Conversely the efforts to cope with the rhythms and manage frustrations, tensions and difficulties are the main obstacles to well-being:
“There were some critical issues, times are tight, we sometimes reply to each other badly, but we know how to understand each other. Not with her. There were times that she closed up without an apparent reason; this has conditioned the experience” (Dimitri, tutor).
Another important element refers to rights, empowerment and material well being. The right to work is one of the main rights enshrined in Italian law and the salary favours greater economic autonomy and the opportunity to plan one’s own future:
“Giulia always says that have a work it is important for her future, and we agree with her opinion” (family members).
Also self determination and personal development are important. The first decision in which Giulia is the protagonist is to do an internships in the hotel sector, as per her wish. Giulia’s opinion is crucial in beginning and continuing or interrupting the activity:
‘I realised that I want to be a cook, the children and teachers are nice, I felt good, I learned new things. At the beginning I had trouble going to talk to the teachers, then I learned. It was nice to see the children waiting for me and laughing” (Giulia).
Giulia makes increasingly autonomous choices, both in terms of organisation and management of the procedures and in the proposals. She becomes increasingly sure of herself until she is working independently. One of the essential characteristics of the path is experimentation:
‘It is right to aim high and experiment and evaluate skills, the positive results have been there. Some characteristics of the context make Giulia’s work more complicated, the rhythms that are too fast, that send her into confusion, tiredness, her difficulty with asking for help. It is useful for the future’ (Stefania, educator).
Another important topic is social inclusion and interpersonal relationship that is particularly significant dimension in Giulia’s case, as she sometimes struggles with relationships. Work is an opportunity to compare yourself with a specific task and having role in a job affords people recognition as active members of society, which is especially important for people with disabilities, who are often perceived as mere users of services made available to them. Just the difficulty in being part of the group is the basis for the difficulties Giulia encounters:
“I liked being in the restaurant but sometimes it was difficult, I liked to work alone, to see things prepared by me. I was happy when I saw happy customers. When it was difficult, I stopped for a while” (Giulia).
Theme 2: Factors and Strategies that Favour A Successful Experience
A second set of signs emerges regarding the identification of factors and strategies that can contribute to creating a successful experience. A first element refers to the identification of rhythms and the tasks:
“The most important problem are frenetic rhythms and deliveries that are not always clear, which creates difficulties for Giulia, who does not always manage to ask for help. Another problem is strict separation of tasks between those involved in the preparation of the first and second courses, with consequent difficulty in identifying the tasks that could be entrusted to Giulia” (Dimitri, tutor).
Linked to the rhythms and the task is the assessment of the abilities of the subject that must be valued:
“I considered the possibility of entrusting Giulia with increasingly complex tasks, starting from simpler tasks. I increased her duties, respecting her rhythms. I recognize the importance of Giulia also for the context and the environment is available to understand problems with Giulia and find solutions. We negotiated solution with Giulia, we discuss together. We discovered that these solutions were useful also for other colleagues and also for their well being” (Davide, owner).
Another particularly important element is communication within the workplace:
“A big problem is caused by tensions and misunderstandings between colleagues due, above all, to the rapidity of execution required and difficulty on Giulia’s part with grasping the irony of some exchanges. Then Giulia does not always manage to ask for help; her colleagues, on the other hand, while managing to perceive her discomfort from her facial expressions, often are not able to understand the motivations behind her silences and sometimes do not find the time necessary to deal with the situation with her” (Stefania).
Conversely, it is important to verify that deliveries are clear:
“I understand the importance of clarity in tasks and attention from everyone to always ensure that Giulia always understands. I pay attention to communication methods, tone of voice and nonverbal language” (Giusi, tutor).
Another key point refers to the attention and the sensitivity and willingness to understand Giulia’s needs:
“We understand the difference.. the presence in the restaurant of only employees who must respect the schedules and requests from the owner of the organisation who, although sensitive to the issues of disability, is not present while they work and the presence of a owner that is also a worker: his sensitivity is also recognised by his collaborators. It is important that people shared the values, that all people shared the importance of the activity and the sense for people with disability but also for the context” (social worker).
To do this, It is importance the support offered by the educator Stefania:
“We recognize the importance of the presence of Stefania who, above all initially, helps Giulia to understand the job, supports her in performing her tasks and supports her in identifying the best strategies to resolve difficulties” (Davide, owner).
According to the literature, it is possible to consider different areas of reference when assessing QOL: physical well-being, material well-being, emotional well-being, self-determination, personal development, interpersonal relationships, social inclusion, rights and empowerment. With reference to the factor that allowed positive experience, some elements emerged:
• The inclusion and participation of all the subjects: each person involved in Giulia’s project, both in the design and in the workplace, is included, and everyone’s contribution is decisive. All voices are accepted within the project and the experience is positive and satisfactory for all those taking part. The choice to welcome Giulia came from the employer, but it is only thanks to the contribution of all the employees that she was included. In this sense, disability ceases to be a question concerning the subjects themselves and their family members, but assumes the traits of a social responsibility;
• Building alliances: it is important to create and consolidate a climate of trust between the various actors, with the awareness that it is people who make the difference. In designing the alliances help to identify the most appropriate contexts, thanks to the knowledge of the subject guaranteed especially by the family and school. Subsequently, it is necessary to identify the people who need to be consulted in order to have access to those contexts. Building alliances is also important in the workplace, where everyone has a defined task and a precise role based on their availability and skills. The climate of trust is not a point of departure but of arrival, in the form of an interdependence that emerges through a succession of positive interactions;
• Sharing values: values give meaning and help to build a common background that facilitates shared and coordinated action involving all of the subjects involved in the project. Values are a boundary object shared by different people and make it possible to find convergences with respect to the different intentions and roles. The choice to take part in Giulia’s project is not due to a positive attitude, but to the sharing of objectives and the awareness of wanting to be part of that experience. The sharing of values helps to build common bonds and fosters belonging and a sense of identity, enhancing the role of each actor;
• Evaluation of the potential of the subject and of the context: the work experience arises from an analysis of Giulia’s interests and skills, but also the environment. This assessment is based on the potential of the subject to be fulfilled/unlocked/realised but also on the resources of the context to be optimised. This is made possible by trying to identify the strengths of the person with disabilities and the skills they can develop with their colleagues’ help. At the same time, however, it is useful to reflect on what the context can acquire with Giulia’s help and that of all her colleagues. In this way it is possible to work incrementally, adding tasks and responsibilities over time, rather than eliminating parts of a ‘standard task’ that the subject cannot perform due to personal difficulties or to the employer’s fears;
• Accompaniment: it is important to support the subject gradually, in their knowledge of the context and the tasks they are required to complete. Stefania shows Giulia the sequence of actions to be carried out, ascertains the clarity of deliveries and supports her in identifying strategies to overcome critical issues. Stefania also accompanies the context in identifying the tasks to be entrusted to Giulia and in understanding her attitudes and moods. Terms such as negotiation, comparison, and exchange are the basis of the new balance that must be built and maintained within the organisation.
The concept of QOL is getting increasing attention as a tool for evaluating the policies and practices implemented to support those with disabilities. The literature is consistent in identifying eight areas of reference when assessing QOL: physical well-being, material well-being, emotional well-being, self-determination, personal development, interpersonal relationships, social inclusion, rights and empowerment. In the literature there are numerous scales that evaluate QOL for subjects who present criticalities that are mainly related to the involvement modalities of the subjects with disabilities themselves and to opportunities to involve their relatives. The present work focuses on two elements: the description and analysis of the three-year alternation process that leads Giulia to be hired at a farm, after having worked in the school canteen of a kindergarten and in a big restaurant and the impact of these experiences on her QOL and on that of her colleagues. The analysis showed that there are benefits in all eight areas described, not only for Giulia but also for other people working with her. The QOL, in fact, rather than being a purely individual construct, depends largely on the interactions and interdependence that are created with the subjects with whom we build a relationship. In addition, the skills acquired, and the role of the worker, also determine the role that can be played within the company. Finally, with regard to the factors contributing to a positive experience, the key elements are: the inclusion and participation of all the subjects in the project, the building of alliances, the sharing of values, the assessment of the potential of the subject and the context and accompaniment. The school plays an essential role because it allows the student to build projects that allow them to test their skills and, at the same time, to get to know the resources of the context. The research has two limitations: the description of an individual case and the choice to end the story and the analysis with Giulia being hired. This choice comes from the desire to make explicit the path, the resources put in place and the voices of the actors involved. In this way it is possible to remember the different phases of the activities, to reflect on different voices around the experience and to make sure that others, with adaptations linked to the specificity of the contexts, can be inspired to create new experiences.
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