INTERNATIONAL JOURNAL OF SOCIAL WELFARE DOI: 10.1111/ijsw.12283 Int J Soc Welfare 2018: 27: 157–167 ISSN 1369-6866 Families of adult people with disability: Their experience in the use of services run by social cooperatives in Italy Bucci F., Vanheule S. Families of adult people with disability: Their experience in the use of services run by social cooperatives in Italy Social cooperation has historically played a pivotal role in developing socio-educational services for people with disability, thereby contributing to counteracting the social isolation often associated with this condition. Using a mixedmethod methodology, this study maps the diversity of perspectives on how the use of disability-related services run by social cooperatives impacts on and becomes meaningful to family life. One hundred twenty-nine interviews with family members of adults with different kinds of disability were studied using emotional textual analysis. It provides a multidimensional model to read and map the multiplicity of emotional meanings related to disability and the use of services, shedding light on key diversities in how family members emotionally make sense of care and support. The results reveal the importance of supporting family-carers on two main issues: accessing a less passive representation of their relative with disability; and being able to test and acknowledge limits without succumbing to a sense of powerlessness. The last four decades have seen a clear worldwide evolution in legislation around protecting the rights of people with disability, as exemplified by the 2006 United Nations Convention, now ratified by 163 States and the European Union (United Nations, 2016). Despite such evolution, the experience of isolation by people with disability and their carers proves to persist. Historically, the shift from institutional to community care has led to a vacuum of care that families have been expected to fill (Bowey & McGlaughlin, 2007). Still today, caring for adult people with disability often remains primarily the responsibility of family units, even in countries with well-developed systems of support (WHO, 2011).1 More recent international research has addressed in particular the difficulty that families of people with intellectual disability face in planning for the future or undertaking initiatives about the future of their relatives (Heller, Caldwell, & Factor, 2007; Mencap, 2002; Taggart, Truesdale-Kennedy, Ryan, & 1 Note that the above-mentioned UN Convention only marginally tackled family and informal carers’ needs. Fiorella Bucci, Stijn Vanheule Department of Psychoanalysis and Clinical Consulting, Ghent University, Ghent, Belgium Key words: disability services, residential and day services, adult social care, family member’s perspective, social cooperatives, organisational development, mixed-method research, psychosocial research Fiorella Bucci, Universiteit Gent, Faculteit Psychologie & Pedagogische Wetenschappen, Vakgroep Psychoanalyse en Raadplegingspsychologie, Henri Dunantlaan 2, 9000 Gent, Belgium E-mail: fiorella.bucci@ugent.be Accepted for publication 2 July 2017 McConkey, 2012). Such research highlights the reluctance of older caregivers to plan for the housing needs of their adult children, thus preparing for the transition from the family home before the caregivers become unable to continue in their caring role (Bigby, 2004; Gilbert, Lankshear, & Petersen, 2008). This presents a significant problem, especially when we consider the increasing longevity of this part of the population. More generally, care relationships, in case of high needs care, can be associated with experiences of isolation and disempowerment both for the caregiver and the person receiving care. However, as Johansson, Leonard and Noonan have highlighted (2012), this strongly depends on the conditions and the contexts of care. Recent studies on social welfare have posed the question as to whether the personalisation of adult social care through direct payments to the citizen in lieu of service provision (Caldwell, 2007; Powers, Sowers, & Singer, 2006) – while introduced in order to give service users more choice and control over their own care – is not ultimately posing new risks of isolation, both for beneficiaries and care providers Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V 157 Bucci & Vanheule (Ali, 2009; Daly, 2012).2 This has prompted a renewed interest in the cooperative tradition and in care and assistance services provided by cooperative enterprises. The hypothesis at stake is that enterprises based on cooperative values might help to meet needs relating to welfare (Fisher et al., 2012), by creating systems of mutual aid and shared responsibility that protect individual choice while generating social capital (Johansson, Leonard, & Noonan, 2012; Roulstone & Hwang, 2015). This article presents the results of a 2-year research project that explored the experiences of the family members of adult people with different types of disability, specifically in terms of their use of residential and day services run by social cooperatives in Italy. In Italy, social cooperation has historically played a key role in promoting social integration and independent living for people with disability. Social cooperatives took shape within the reform movements against the institutionalisation of disability which, at the end of the 1970s, led to important laws, for example for the closure of mental asylums (law N. 180/78), as well as for the full integration of young people with disability into mainstream education (law N. 517/77) and professional training (law N. 845/78). Those movements drew attention to the social components of disability by firmly contesting the prevailing perspective that equated handicap with illness and deficit (Canevaro, 2007; Shakespeare, 2013). Originally launched by small groups of families and volunteers (with Catholic or Socialist roots), social cooperatives gained momentum in response to the rapidly emerging new demands for services that the public sector, due to financial and organisational obstacles, was not able to provide. Such new demands were related to the de-institutionalisation process on the one hand, but also to the shift towards a nuclear family structure and an increased involvement of women in the labour market on the other, which jointly called for a deep restructuring of care functions (Borzaga & Zandonai, 2005). Their work enabled the start of new experiences of supported co-habitation between people with disability, and of day services intended to offer – besides educational-rehabilitation programmes – mainly a social environment where people could share 2 The most common option for people receiving direct payments has been direct employment of personal assistants (Scourfield, 2005). Critics have expressed concern that the individualised relationship between employer and worker may represent a threat for staff [with the employee being ‘isolated from opportunities for training, improved status and negotiation of working conditions’ (Fisher, Baines, & Rayner, 2012, p. 510)] and reduce possibilities for collective action (Burton & Kagan, 2006). 158 friendship, interests and projects (Battaglia et al., 2002; Canevaro, 2001). They represent, to this day, one of the country’s most important operators of social, health and educational services for people with disability (Bland, 2011; Thomas, 2004). As Kathryn Knight (2013, p. 670) has observed, social science research has traditionally been ‘moving along a trajectory that places undue importance on the internal characteristics of families (in particular mothers) to cope with the pressures of managing a child with disability’ – see for instance the copious literature on the notion of resilience (Muir & Strnadova, 2014) – while the impact of services and of the wider socio-political framework on the families’ experience has not been sufficiently investigated. The study presented in this article aimed to map the diversity of perspectives on how the use of disability-related services run by social cooperatives impacts on and becomes meaningful for family life. We assumed that the reasons family members appreciate the services they receive are multiple and complex, and cannot therefore be measured unidimensionally. We need multidimensional models to detect and map them. In particular, our investigation focussed on the emotional meanings attached to the use of services, the study of which can provide insight into the expectations of families towards the services, what role they attribute to the services and the extent to which the relationship with the services proves to be a useful and transformative experience. Data are based on in-depth interviews analysed through a method of psychological textual analysis, called emotional textual analysis (ETA). Method The present study was commissioned and carried out in cooperation with a consortium of social cooperatives in North-Eastern Italy that cover caring and socio-educational activities for adults with different kinds of physical and mental disability. The study was part of a wider range of research initiatives aimed at supporting the cooperatives in verifying the effectiveness of existing services and planning innovations, by involving users and their families in such a process. Open-ended interviews We collected 129 open-ended interviews with the family members of the service users. All interviews started with a single open-ended question aimed to let the interviewees freely narrate their experience and associations in relation to the use of disabilityrelated services and to explore their demands, proposals and expectations about the future. Each interview lasted approximately one hour and was Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V Families of adult people with disability Table 1. Types of services used by the family. Day service Residential service Residential and day services Day service and planned respite care Missing Total Table 3. Family member(s) participating in the interview. Number % 81 24 14 8 2 129 62,8 18,6 10,9 6,2 1,6 100,0 based on the aforementioned open-ended question introduced by the following presentation: The cooperative X participates in a research project commissioned by the consortium Y with the aim of reflecting upon the construction of disability-related services and inquiring about the families’ needs. We are conducting interviews with the family members of the service users. The research findings will be discussed with both the families and the staff of the cooperatives that have participated in the study in order to foster a debate and share reflections on the assistance for people with disability. Your experience will bring a valuable contribution to improve the quality of services. We can start immediately. I will ask you a question. For assistance with your child [or sibling], you are using the services of the cooperative X. We invite you to reflect together on this experience and on what use you are making of it. For the organisation of new services, we would also like to know about your expectations for the future and what proposals you can make based on those expectations. Sample characteristics Tables 1–5 illustrate, respectively: the different types of services used by the research participants’ relatives; the different types of disability included in our sample; the degree of kinship of the interviewed family member with the relative with disability; the age of the interviewed family member and of the relative with disability. All of the cooperatives included provide both residential and day services. The main type of residential Table 2. Types of disability. Number % 31 13 15 24 22 13 11 129 24,0 10,1 11,6 18,6 17,1 10,1 8,5 100,0 Mother Father Both parents Siblings Other Total Number % 45 16 32 24 12 129 34,9 12,4 24,8 18,7 9,5 100,0 service they offer is the community home (comunita alloggio), that is, housing where up to ten people with disability co-habit with the support of specialised staff. The community home can also guest people for short periods of time, often a weekend, within the framework of a respite care programme. The latter can be preparatory to a permanent transfer. The day services carry out socio-educational activities, seeking to maintain, appraise and develop the person’s abilities, while promoting social exchange. In some cases, people living in a residential service also attend a day service for a few days per week. Regarding the types of disability included in our sample, in the vast majority of cases it was a congenital disability or a disability diagnosed in early childhood; in only nine cases was the disability acquired in adulthood as a consequence of a trauma. The class intellectual disability refers to different forms of intellectual and behavioural disabilities, accompanied in a few cases by a psychiatric diagnosis (mainly psychosis). Regarding the diagnosis of autism, a very wide and diversified tradition of practices has developed over time. For this reason, we decided to consider it as a separate class, likewise with Down syndrome. The class of multiple disabilities refers to the combined presence of an intellectual, physical and sensorial impairment. The focus of our investigation is disability in adulthood. With the exception of two people (aged 16 and 17), in all cases the relative with disability was over 18 years old. Emotional textual analysis All interviews were recorded, transcribed and collated together in order to form a single textual corpus that was subsequently analysed by ETA (Carli & Table 4. Age of the family member. Intellectual disability Autism Down syndrome Intellectual and physical disability Physical disability Multiple disabilities Other Total Number % 23 75 23 8 129 17,9 58,1 17,8 6,2 100,0 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V 159 From 29 to 50 years From 51 to 70 years From 70 to 83 years Missing Total Int J Soc Welfare 2018: 27: 157–167 Bucci & Vanheule Table 5. Age of the person with disability. From 16 to 35 years From 36 to 50 years From 51 to 64 years Missing Total Number % 60 51 15 3 129 46,5 39,5 11,6 2,3 100,0 Paniccia, 2002; Carli, Paniccia, Giovagnoli, Carbone, & Bucci, 2016). ETA is a method of psychological text and discourse analysis that was developed at the end of the Nineties by Renzo Carli and Rosa Maria Paniccia to enable psychosocial research and intervention with social groups and organisations. By exploring how the different social actors emotionally symbolise their shared social and organisational reality, ETA allows crisis factors as well as development resources in local relations to be identified. From a theoretical-epistemological point of view, ETA rests on a specific theory of emotion as a form of knowledge linked to the unconscious, which participates in the psychological construction of reality according to rules that psychoanalytic theory has sought to explain. More specifically, the contributions of Ignacio Matte Blanco and Franco Fornari to a semiotic theory of mind are central to ETA. According to these authors, the conscious and unconscious mind can be conceptualised as two, equally systematic, modalities of sense-making that interact continuously. The former is ruled by conventional cognition and by the non-contradiction principle (which states that, e.g., if A > B, then B cannot be >A at the same time; thus, A and B are distinct objects). Unconscious mental activity, by contrast, is mainly emotional and governed by principles of symmetry and generalisation (according to which, e.g., if Marco is the father of Bruno, then also the reverse is possible; thus, objects can be assimilated with each other along potentially infinite associative chains) (Matte Blanco, 1975). This bi-logic (in Matte Blanco’s words) implies that those aspects of reality that we perceive as endowed with a clear and univocal sense, in terms of cognition, are at the same time emotionally polysemic. They evoke multiple experiences and associations in terms of unconscious meanings, which determine our subjective relation to reality. This double level of meaning is reflected in language and can be inferred by studying language (Fornari, 1976). In cooperation with the French psychosociology movement, Carli and Paniccia developed a method for studying how emotional symbolisation unfolds within and through social relations (i.e., beyond the intrapsychic domain). Mapping emotional meaning-making activity might shed a new light on 160 the functioning of social groups and organisations (Carli, 2006; Carli & Paniccia, 2002). They developed ETA with the goal of establishing a standardised tool for conducting such analysis. ETA aims to build a model of the way research participants emotionally symbolise the issue addressed in a study (in our case the use of disability-related services). Since the method maps prevailing emotional perspectives inside a research group, it allows similarities and differences between subgroups to be studied. For this purpose, ETA uses an operational procedure combining qualitative and quantitative analysis. In this sense, it uses a mixed-method research methodology. The quantitative analysis is carried out by means of specific software for textual data analysis called Alceste (Reinert, 1990, 1993). In the first stage, the software generates a dictionary of all words contained in the text, with their related roots and frequencies. This allows the research team to select the dense words in the textual corpus, that is, words with a salient emotional meaning3 (Carli et al., 2016). Subsequently, the text is cut into homogeneous segments, called elementary contextual units (ECU), which are sentences or fragments of sentences delimited by punctuation. These ECUs are automatically determined by the programme so as to have similar length. Then, through multi-dimensional analysis – namely, multiple correspondence and cluster analysis (Ratinaud & Marchand, 2012; Reinert, 1983) – the software detects how the dense words recur within the text, mapping their most significant patterns of association. Clusters of dense words are thus discerned, and then positioned in a factorial space (see, e.g., Figure 1 and Table 6). As one can see in Table 7, for each cluster we have a list of the dense words that characterise it, ordered by chi-square value. The larger this value, the more important the word is for the statistical construction of the cluster. Alceste also maps how each cluster is related to specific socio-demographic variables, also expressed in terms of a chi-square value (see, e.g., Table 8). The clusters therefore cast light on the implicit emotional composition of the text which was not immediately evident in the text’s original form. The method presumes that the implicit emotional 3 The emotional meaning of dense words is evident even when the word is isolated from a sentence: for example, ‘hatred’, ‘failure’, ‘ambition’. On the contrary, words like ‘to go’, ‘to think’, ‘to do’, just like modal, auxiliary and widely used verbs, or many adverbs, have a low emotional profile and do not indicate emotions except, at times, within a sentence. These are considered non-dense. Depending on the context, a word may acquire particular emotional and symbolic relevance. Thus, the dense words’ selection is guided by knowledge of the local research context. Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V Families of adult people with disability Table 6. Relationship between clusters and factors (cosinesa). Cluster 1 (41,04 %b) Cluster 2 (12,86 %b) Cluster 3 (11.28 %b) Cluster 4 (34.82 %b) Factor 1 Factor 2 Factor 3 .799 –.448 .463 –.849 .507 –.617 –.722 .322 .323 .647 –.515 –.420 Note: Each factor has to be considered as a continuous dimension with a positive and a negative polarity, and a central point that corresponds to the central point of the whole space where the factorial axes intersect each other. a The cosine function expresses the intensity of the correlation between factor and cluster (from 0 to 1); in other words, it indicates which factors contribute more to explaining the position of the cluster within the structure of the data. The most significant correlations are shown in bold. b Percentage of ECUs included in each cluster among the total number of classified ECUs. Figure 1. The factorial space. Note: The three factorial axes correspond to the three spatial dimensions: horizontal (first factor), vertical (second factor) and distance (third factor). composition of the text is indicative of the interviewees’ emotional meaning-making activity. The final step of ETA consists of a qualitative interpretation of the clusters. Its goal is to translate the information obtained from the clusters, in terms of associations between words, into narratives that shed light on the implicit emotional meaning of the experience. Beginning with the dense words with the larger chi-square value in each cluster, first, we analysed the emotional polysemy of the words, by studying their etymology in order to retrieve their symbolic sense beyond the literal sense (Carli & Paniccia, 2002; Matte Blanco, 1988). We went on to interpret the sense of the associations between words and, finally, of the relationships between clusters inside the factorial space. In this way, the emotional connotation of the issue at stake by the research participants becomes increasingly clear and can be differentiated into various components in relation to each other. The interpretative work is based on the theoretical model of Carli and Paniccia (2003), which mainly draws on the abovementioned psychoanalytic references. Basically, they distinguish different areas of emotional symbolisation that all play a role in the Table 7. Clusters of dense words (ordered by chi-square valuea). Cluster 4 Cluster 1 Cluster 2 Cluster 3 v2 Dense words v2 Dense words v2 Dense words v2 Dense words 142,91 69,36 61,10 56,65 51,37 51,12 49,56 49,34 42,60 40,41 38,29 37,83 34,00 33,39 32,77 28,82 28,14 27,03 26,26 25,85 To eat Home Sunday To drink To wash Bed Content To sleep Saturday Mountain Morning Bathroom Kitchen To dress Night Couch Alone Mum To sit To get angry 66,82 48,83 44,12 37,55 36,72 36,66 35,98 34,15 32,22 30,55 29,87 29,84 29,79 29,14 28,79 28,52 27,45 Activity Admission Limit Difficulty Relationship Positive Severe Organisation Difference Handicap To propose To choose Problems Negative Educator Constant Project 120,80 116,18 84,49 79,41 66,58 65,43 65,15 62,32 59,95 59,95 50,26 48,31 47,68 46,36 44,75 41,73 39,88 35,82 35,29 33,17 Hospital Doctor To cure Feet Surgery Professor To fall down Paediatrician Examinations God To be born To intervene To walk To die Epilepsy Teeth Neurology To touch Injury To save 214,67 132,86 131,04 127,63 120,12 120,11 103,18 101,94 95,39 88,94 81,54 77,77 77,18 59,96 51,33 48,82 48,82 48,82 48,69 38,65 38,89 Money Voice To pay Region Euro Politicians Rights To cost To spend Pension State Fee Information Commune Foundation Government Institution Rome Bank Law To coordinate a In decreasing order. Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V 161 Bucci & Vanheule Table 8. Socio-demographic variables associated to each cluster (ordered by chi-square valuea). Cluster 4 Cluster 1 Cluster 2 Cluster 3 v2 Socio-demographic variables v2 Socio-demographic variables v2 Socio-demographic variables v2 Socio-demographic variables 150,99 Intellectual disability 169,07 Autism 377,83 Family member’s age: > 70 109,16 79,26 Residential service 163,52 User’s age: 16–35 95,69 71,55 User’s age: 36–50 155,29 Family member’s age: 31–50 Day service 57,73 Day service and planned respite care Family member’s age: 51–70 Physical disability 56,15 a Intellectual and physical disability Interviewed family member: father 53,22 48,94 In decreasing order. adaptation process between an individual and the context (see, e.g., Carli & Giovagnoli, 2011). This adaptation process is a continuum, starting with the primitive dichotomous emotional distinction between good/bad, friend/enemy, then passing through affective meanings associated with the experience of the body, for example the dichotomies inside/outside or bottom/top. Finally, we reach more elaborate, specific areas of emotional experience regarding social relations and their organisational contexts. In the interpretation process, one goes constantly back and forth between the details of words and words’ cooccurrences, and the significance of these words in terms of the theoretical model. While interpreting the clusters in the qualitative part of the ETA, we also study the link with the interview content, relevant literature on the topic of study, and background knowledge of the research context and of the local culture. This is in order to understand how the affective symbolisations that we have been examining give rise to specific social dynamics (e.g., of conflict) or are the outcome of specific cultural processes. Several meetings were devoted to discussing the research results with the interviewed families, the staff and the management of the cooperatives. This was a crucial step in line with the research objective to provide the cooperatives and the families involved with tools for reflecting on the emotional implications associated with the use of services and, rethinking in this light, their efficacy and improvability. Results The data analysis produced four clusters of dense words within a factorial space made of three factorial axes. Of 5,162 ECUs, 3811 units (73.83%) were classified in a stable way in the clustering process. This indicates a very good fit between model and data. Figure 1 and Table 6 illustrate the factorial space and the statistical relationship between clusters and 162 factorial axes. We will discuss the clusters according to their position on the factorial axes, starting from those positioned on the first factor, which include the higher number of ECUs (see Table 6). Two clusters load onto the first factor: Cluster 4 (C4) and Cluster 1 (C1). Since they are positioned on the opposite polarities of the factor, they tell us about different sides of a same dimension. Cluster 4: dedication C4 is related mainly to the accounts of families of adult people with intellectual disability, aged 36–50, who live in a residential facility (see Table 8). The first word in the cluster is eat: that is, a primary need and a vital action, which is essential for growth and for existence itself. Eating stands for the primary task and the symbolic nucleus of a care relationship. The second word is home. In Italian casa, from the Latin casa which means hut, that is, a place where one can find shelter and protection from external adversity. In C4 the symbolisation of the relationship with the person with disability is centred on fulfilling basic needs through carrying out daily caregiving activities which over time seem to have constituted a reassuring ritual: eating, drinking, washing, going to bed, sleeping, going to the bathroom, preparing food in the kitchen, dressing. Everything seems to aim at maintaining this equilibrium. No space is left for frustration, absence, conflict or for the manifestation of desires which might diverge from basic needs. The words Sunday and then Saturday appearing in the cluster still talk about a daily routine but point to a shift. Sunday in Italian culture is the day par excellence in which the family gets together. In this case, the weekend is also the time when many users of residential facilities go back to their original homes and spend the day or the entire weekend with their family. These occasions symbolise the united family but here in particular they symbolise a Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V Families of adult people with disability ‘reunion’ which happens after a separation. This separation creates space for a possible development in family relationships. In the community home parents are given the chance to experience a relationship with their child whereby differences can be more acknowledged and valued: for example, his/her difference as an adult man or woman who cannot be perpetually assimilated to a child. Signs of this shift are visible in the word mountain (referring to the excursions that are usually organised by the cooperatives for the service users), which symbolically points to a world capable of amusement, variation and that has challenging as well as desirable experiences. At the same time, the separation comes with an experience of abandonment and of crisis. As indicated by the last words closing the cluster (night, couch, alone, mum, to sit, to get angry), a recurring concern among the parents and siblings interviewed was that without the community home, their relative could be left alone, sitting somewhere with no one taking care of him/her. These last words also recall the context of crisis in which the parents’ decision to let their disabled child move into a residential facility often emerged. As some interviews made clear, for example, from a certain moment on, the child refused to sleep, got angry, wanted to stay on the couch until late at night. The parents interpreted such events as signs of a malaise that the person was experiencing at home, and therefore started to search for more independent living arrangements. Cluster 1: project On the opposite polarity of the first factor, C1 gives us insight into another perspective, which mainly regards families of young people with autism (16–35 years) who use a day service. The admission of their children or siblings to a day service (specifically for people with disability) has a peculiar relevance for these families and an ambivalent meaning. Although in Italy children with disability are fully integrated in mainstream education, the Italian labour market fails to include a vast majority of people with mental disability, especially people with autism (Censis & Fondazione Serono, 2011). For this reason, at the end of school, attending a day service is often the only way to access a social life beyond the family context. Thus, on the one hand, as we can see from the most significant words in C1, the admission to a day service emerges as a priority, since this means access to a realm of activity (i.e., educational and social activities) as opposed to the passivity that could result from no admission. At the same time, such an admission comes with a phantasy of severity: carers are worried that their relative will be completely identified with the world of handicap, that is, a state that is not apt to evolve and renders them powerless. However, C1 also clearly shows the transformative function of services with respect to this experience. Within the services, family members can develop relationships within which they can act upon the meaning of the problems they deal with and learn how to use limited resources. Here, they are offered an opportunity to choose, propose and evaluate positive and negative dimensions. They find an organisational competence that families alone do not have available. This enables them to look at disability, not in terms of severity, but rather in terms of limits that make sense in relation to contexts, and of problems that can be tackled on a case-by-case basis – in other words, a completely different prospect. One professional figure in particular is named inside the cluster: the educator. From Latin, ex-ducere (i.e., to lead out, to bring to light) means to organise contexts that allow competences to emerge and evolve from the form of a potential into the form of productive and transformative resources. What the families seem to expect from the day services is to continue an educational function, which symbolically implies the possibility to conceive a project but also the effort of being faced with limited results and the need for constant engagement. Summary of the first factor The first factorial axis (see Table 6) focuses on the relationship between families and services run by the social cooperatives, and sheds light on the emotional components associated with the demand for and the use of residential or day services, particularly in families of people with intellectual and behavioural disability. This factor as a whole calls into question the problem of belonging: How do families try to create systems of belonging where their relatives with disability might feel accepted, valued and part of a social group? In order to do this, how do families deal with the diversity associated with disability? On this point, C4 and C1 stand for two soundly different relational strategies. In C4 the experience of belonging emotionally rests on a strict splitting between inside and outside: the inside, that is, the space of belonging, is identified with the home and the family, where relationships are regulated by a daily routine of care that creates a normalcy for the person with disability and his/her family members. The inside can be symbolised as friendly, good, known and familiar, as long as we split every component of extraneousness (desires, potentialities and developments included) to the external context. As a Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V 163 Bucci & Vanheule consequence of this splitting, the latter inevitably comes to be symbolised as threatening and hostile. While the family members in C4 seem to ask the residential services run by the cooperatives to reproduce such a family functioning and protective environment, the services partially frustrate such an expectation. They introduce novelties that disrupt the schism between inside and outside, thereby countering the risk of isolation resulting from such a schism. Alternatively, the main task that parents in C1 seek to pursue is to provide their children with a social life and activity. The whole cluster is centred on the transformative value of belonging. They do not ask the day services to function like a family, but rather to offer specific competences and resources that might enable the parents to make sense of the difficulties linked to disability in evolutive terms. C1 is an important fulcrum of our inquiry. It is also significantly associated with the second factorial axis, which is discussed below. With the remaining two clusters, cluster 2 (C2) and cluster 3 (C3), associated with the second and third factor, our investigation expands on the wider social frame, and includes the viewpoint of physical disability. Cluster 2: idealisation of medicine C2 draws mainly on the accounts of parents aged over 70, whose children have both intellectual and physical disability. The most important dense words of the cluster (hospital, doctors, to cure) are highly indicative of its symbolic nucleus. Here we encounter an experience that strongly associates disability with illness and the search for a cure. The cluster deeply resonates with an image of disability which was typical of a time predating the legislative reforms for the social integration of disabled people, when the most important answer provided from the social system to disability-related issues came from medicine. During the interviews, the parents retrace their own experience from its very beginning, when they realised that there was something wrong as their child could not stand (on his own feet) and fell down. There started their path through medical examinations and interventions. Disability is experienced as a tragic and fatal accident which seems incompatible with life itself. God, to be born, to die, to save: All along the cluster, through different words, we find ourselves confronted with inescapable dimensions. The exclusive focus on physical injury in C2 and on the expectancy of interventions that might remove the damage, tell us how the parents reacted to an experience of impotence, by pushing the problem outside themselves and treating 164 it as an external enemy, which they have tried to combat and annihilate. The idealisation of medicine emerging in the cluster is the backbone of this dynamic. According to Fornari (1976), within modern healthcare, medical action emotionally founds itself on a splitting between disease and diseased person, namely between the ‘evil other’ (the disease) and one’s ‘own good’ (of the diseased person). On the basis of this separation, the doctor can cure the disease by resorting even to aggressive interventions and, at the same time, he can ally with the patient in this combat by identifying himself with the subjective suffering of the diseased person. In C2 the exclusive focus on the disease as ‘evil other’ seems to have translated for these families into profound isolation, where experienced and prospective developments within the relationship with their children or other social contexts become unidentifiable. Cluster 3: rights defence Finally, C3 is related mainly to the use of a day centre in combination with planned respite care, and to family members aged 51–70 of people with a physical disability (in most cases, spastic quadriplegia). Money, voice, to pay, region, euro, politicians, rights, to cost, to spend, pension, state, fee: Economic power means power to let your voice be heard. This equation emerges from the principal words in the cluster. In the Italian welfare state, people with disability are entitled to a system of benefits and pensions which, from the point of view of these family-carers, also means having a social voice and recognition. Now, as a consequence of announced or already established cutbacks in public funding for social welfare, such equilibrium risks falling apart. Families appeal to the political authorities for the protection of their rights. It must be noted that such rights were the result of a political struggle that started in the 1970s, which saw families and people with physical disability in the frontline. Following the 2008 financial crisis, Italy began to redesign its social welfare system; this is still ongoing and features relevant regional variations. The general downsizing of the state’s role has been one of the main characteristics of this process, and has brought into play, or made more visible, a plurality of actors involved in the provision and funding of social care. They appear as a list of items in the cluster (commune, foundation, government, institutions, Rome, bank), next to a demand on the part of the families for an informative and coordinating function, which might act upon such a highly fragmented institutional scenario. Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V Families of adult people with disability Summary of the second and the third factor C2 and C3 oppose each other on the third factor (see Table 6), and actually represent two opposite visions which have dominated the history of disability as well as the public, political and academic debate on the matter. The bio-medical model of disability, on the one hand, focuses on the impaired body of the individual; the social model of disability, on the other, argues ‘that we were not disabled by our impairments but by the disabling barriers we faced in society’ (Oliver, 2013, p. 1024). Although these perspectives oppose each other, they both reflect a deterministic view of disability as a direct consequence of the damaged body or of the social structure tends to make interventions possible only on a medical or political/economical level (Crow, 1996). This is why the two clusters also appear associated with each other on the negative polarity of the second factor in opposition to C1. Such a deterministic view can discourage the participation processes, which seem to be a specific feature associated with C1 and with the relationship between families and services run by the cooperatives. Thus, the second factor as a whole calls into question the problem of power (i.e., power within and of social relationships): Which models of power do families of people with disability identify with and use in constructing their social identity? On the one hand, central to both C2 and C3 is the identification with a conformist normalcy and a strong power that might be able to impose it: Medical technique is expected to provide treatments that might restore a healthy state, and political power is required to compensate for inequalities and empower vulnerable people as citizens with rights. As an alternative to the strong power of conformist normalcy, in C1 we find what could be metaphorically characterised as the soft power of horizontal exchange relationships, which literally consists of the power of questioning, proposing, evaluating, choosing, organising resources and learning. This kind of power does not constitute itself by defining ideal and ultimate states of reality, but rather works on limited outcomes which are meaningful on a case-by-case basis, and in relation to contingent needs; the latter in turn are supposed to develop and can be monitored over time. Discussion and conclusion The most interesting contribution given, in our view, by this study is that of mapping different implicit emotional coordinates within which the experiences of the interviewed families concerning the use of services for their relative with disability might be framed. Our results indicate that the emotional meanings related to disability, and the care and support these require, are multiple. This multiplicity could neatly be mapped in terms of three factors and four clusters that shed light on key diversities in how parents emotionally make sense of care and support. The analysis of C4 supports findings of previous studies carried out in different countries (Bigby, 2004; Bowey & McGlaughlin, 2007; Gilbert et al., 2008; Heller et al., 2007) which showed how parents of adults with intellectual disability struggle to suspend their caring role, even into old age, and to accept the idea that their child might have a more independent life, whereas separation is emotionally related to abandonment. In this sense, our findings highlight that the main problem the family-carers face is to access a less passive and more complex (also more ambivalent) representation of their relative with disability. The experience in the community home might be helpful in making such a shift if it enables parents to imagine a new way of taking care that is less centred on protection and dedication, but more inspired by a subjective interest towards their child’s life and experience in his/her new living environment. This might subvert the idea of separation as mutual abandonment. The issue highlighted by C1 is of a different nature and mainly regards the parents of the younger users in our sample. Concerned about providing their children with opportunities to actively participate in social life, the problem these parents face is that of testing the limits of what they and their children can do, without succumbing to a sense of powerlessness. This is specifically relevant in the case of autism where medical diagnosis presents many uncertainties, on the one hand, and employment opportunities are minimal on the other. Regarding this predicament, the main resource the interviewed parents report finding in the services run by the cooperatives is a relational system that allows them to explore and acknowledge limits by inviting them to actively participate in the definition of problems and the search for solutions. By contrast, this possibility of exploring problems and even of transforming their meaning through our personal experience and interpersonal exchange seems undermined when more deterministic views of disability prevail. As C2 made clear, it seems more difficult for those parents who focus only on physical impairment and its medical care to come to terms with their children’s disability and to re-signify it over time, in relation to developments in their own and their children’s life. On the other hand, focussing solely on economic and social determinants makes it equally difficult to see development directions, especially in circumstances of systemic crisis and change. The current public spending limits and climate of Int J Soc Welfare 2018: 27: 157–167 C 2017 International Journal of Social Welfare and John Wiley & Sons Ltd C 2017 The Author(s). International Journal of Social Welfare V V 165 Bucci & Vanheule uncertainty seem particularly distressing for families in C3 as univocally associated to loss of rights and disempowerment. We believe that these results are in line with the work of Tom Shakespeare and Mårten S€oder, who criticised a unidimensional view of disability, showing how both bio-medical and socio-environmental determinism might undermine the potential agency of disabled people. Though grounded on different theoretical perspectives and research traditions, both authors emphasised the usefulness of approaches to disability, which might account for the plurality of factors and the complexity of ‘reasons’ guiding our relationship with reality, our choices and ultimately the value we attribute to things (e.g., Shakespeare, 2006; S€ oder, 1990, 2009). 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