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    Plan détaillé Texte intégral 1. Introduction2. Deinstitutionalization: a long and ongoing process for persons with disabilities3. The case of Sweden4. Study Design5. Dominant themes6. Results and discussions7. Conclusion and future challenges Bibliographie Notes de bas de page Auteur

    Repenser l’institution et la désinstitutionnalisation à partir du handicap

    Ce livre est recensé par

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    Table des matières

    Deinstitutionalization in Sweden: lights and shadows of an ongoing process from the perspective of some disability organizations

    Mabel Giraldo

    p. 321-342

    Résumé

    Strongly recommended by Un Convention on the Rights of Persons with Disabilities (2006) and reinforced both in General Comment n.5 (2017) and UN Guidelines on deinstitutionalization, including in emergencies (2022), deinstitutionalization has long been a goal of the disability movement and several countries have signed up to realize it and related community living arrangements, including Sweden. Starting from a recognition of the Sweden’s welfare system and related disability policies, this paper aims to critically reflect on deinstitutionalization processes. It utilizes fieldwork data from guided discursive interviews with representatives of the main Swedish disability organizations collected during an internship in the Independent Living Institute in Stockholm (ILI). Using a thematic data analysis, the work explores the reality of and the issues on de-institutionalization and community living in Sweden and discussing on today and future’s challenges with risks for re-institutionalization.

    Entrées d’index

    Keywords : deinstitutionalization, disability, Sweden, independent living

    Texte intégral Bibliographie Notes de bas de page Auteur

    Texte intégral

    1. Introduction

    1The principle of independent living and the right to community inclusion is expressed in art. 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD, 2006) and reinforced in General Comment n.5 (UN 2017) and UN Guidelines on deinstitutionalization, including in emergencies (2022). These documents promote and ensure equal opportunities to all persons with disabilities (PwD) to choose how, where and with whom to live, not limited to the place of residence but including all aspects of a person’s living arrangements.

    2The UN intention is reflected in the Swedish disability policy, especially from 1990s, which promote equal and full participation in society for PwD and empower them to live independently through the fulfillment of intentions for good living conditions (von Granitz et al., 2017). This legal mandate influenced the dissolving of residential institutions for PwD and the establishment of community living support measures (Katoda, 2014). Despite this, due to the today service provisions, there are still significant shortcomings in the possibility of participation and self-determination for PwD, especially for those with intellectual and multiple disabilities (Jormfeldt & Tideman 2021; Talman et al., 2021).

    3Starting from a recognition of the Sweden’s welfare system and related disability policies, this paper aims to critically reflect on deinstitutionalization processes. It utilizes fieldwork data from guided discursive interviews with representatives of the main Swedish disability organizations collected during an internship in the Independent Living Institute in Stockholm (ILI). Using a thematic data analysis, the work explores the reality of and the issues on de-institutionalization and community living in Sweden and discussing on today and future’s challenges with risks for re-institutionalization.

    2. Deinstitutionalization: a long and ongoing process for persons with disabilities

    4Deinstitutionalization has long been a goal of the disability movement and several countries have signed up to realize deinstitutionalization (Karlsson & Bolling, 2022). This call has predominantly resulted in the move towards more community-oriented forms of supported accommodation in several sectors within the social service system (psychiatric services, special education, services for older people, childhood education settings, etc.) (Tideman & Tøssebro, 2002). Benefits of moving from institutions to community for PwD are well established in the available literature as they are associated with improvement in lifestyle (as indicated by community participation, social activities, contact with family and friends, satisfaction, choice, self-determination) (Robertson et al., 2001; Emerson et al., 2000) and developmental outcomes (e.g., adaptive behavior) (Kozma, Massell & Beadle-Brown, 2009; Emerson et al., 2001, Kim et al., 2001). Results indicated that community relocation has an overall positive impact on PwD’s life quality (Chowdhury & Benson, 2011).

    5Deinstitutionalization is strongly recommended by UN Convention on the Rights of Persons with Disabilities (2006), especially in the article 19 related to “Living independently and being included in the community” that recognizes “the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community”. The Convention breaks down PwD’ “full inclusion and participation in the community” into three elements: choice, support and availability of community services and facilities.

    6Even though this overall international trend, important dissimilarities across sectors or between countries still exist and, according to Tideman and Tøssebro (2002), «neither the institutions, the reform/deinstitutionalization processes nor the community services were uniform phenomena» (p. 23).

    7For this reason, in 2017 the UN Committee published the General Comment n. 5 on article 19 of the Convention aiming at identifying implementation gaps and, to a certain extent, misconceptions about the UN principles. Specifically, it provides both a definition of independent living and related arrangements, being included in the community and personal assistance and related criteria (core elements) for their implementation. Recently these recommendations were completed by specific Guidelines on deinstitutionalization, including in emergencies (UN, 2022) aiming at pointing out that deinstitutionalization processes are either not compliant with the Convention or are overdue, as PwD worldwide continue to be placed in institutions under life-threatening conditions (art. 4).

    8According to these supranational mandates, also European countries have committed themselves to a process of deinstitutionalization. Both the European Union (EU) and its Member States have emphasized deinstitutionalization in their regulatory framework and policy reforms to implement the CRPD. However, comparatively little attention has been focused on how to measure the impact of these changes on the lived experiences of PwD (Council of Europe Commissioner for Human Rights, 2012) and the lack of reliable and comparable information about independent living outcomes in the EU reflects this (FRA, 2015).

    9In order to address these challenges, in 2017 EU Fundamental Rights Agency (FRA) has published a three-report series, entitled From institutions to community living, which presents cross-cutting issues emerging from desk research and statistical analysis. In particular the third document, Part III: outcomes for persons with disabilities, highlights the risk that more institution-like living conditions and re-institutionalization processes occur and the policies related to deinstitutionalization process which vary from country to country tracing a heterogeneous picture (FRA 2017; 2020).

    10For example, Scandinavian countries – on which the paper is focused – have been in the international avantgarde for half century. In welfare policy terms, they are seen as versions of a rather distinct social democratic welfare model (Esping-Andersen, 1990)1 where principles such as universalism and equality have strong standing. Alongside with an intense academic and political debate, fifty years ago Nordic countries used the concept of normalization2 as “conceptual banner” for a set of criticisms of long-stay residential institutions (Tøssebro, 2016). The concept had a vast impact internationally – particularly in the English-speaking Western world – and set the stage for deinstitutionalization and community living in several countries. First, in Sweden.

    3. The case of Sweden

    11Sweden has a history of being at the forefront of disability policies, including support and services for PwD (Karlsson & Bolling, 2022). Its entire post-war period has been characterized by a process of change with the development of community services and the move away from institutional care (Mansell, McGill & Emerson, 2001). On the impetus of the normalization principle, institutions came to be seen as in conflict with prevailing policy values in the Scandinavian welfare states and, consequentially, as an unnecessary option that created barriers to social justice, person-centered care, equality, and participation (Tøssebro, 2016).

    12Special legislation that gave rights to PwD was introduced thanks to a general political and ideological opposition to institutions (Tøssebro et al., 2012), and policy changes became evident from the late 1960s aimed to normalize living standards and PwD into society (Sandvin, 1996). In this phase, the role and custodial character of large institutions was questioned, and the concept of normalization became the ideological banner of not primarily closing institutions, rather of a program for reforming and improving them (see the so-called Special Services Acts in 1967; 1968). Dormitories disappeared, the size of institutions and living units decreased, and care became more active.

    13These programs were later combined with decisions to close institutions and replace them with housing and support within community, trigged by some scandals in institutions (Tøssebro, 2016) and influenced by the empowerment and independent living movements (Ratzka, 1986; Karlsson & Bolling, 2022) that facilitated a climate open to new ideas. Therefore, in 1980s the debate widened to issues concerning general policies for PwD and the topics of accessibility, participation and self-determination became the focus, rather than «normalize» living conditions (Katoda, 2014). As stated in the draft of Proposition on the Act on Social Services submitted to Parliament in 1979 (prot. 1979/80:1), «a good residence is a prerequisite for people with disabilities to participate in the life of the community and to live like other people. The objective of housing policies should be that all people have their own dwelling. Residential institutions in which people with disabilities live together are clearly behind the times. This inherent distinctiveness is contrary to fundamental values» (p. 9). This deliberation resulted in the Act on Special Services for Mentally Retarded and Others, the New Special Services Act enacted in 1985, which improve every facet of daily life of persons with intellectual disabilities, including education, leisure time, housing, and employment.

    14During the 1990s, in Sweden a new wave of normalization took place and focus shifted from downscaling and improvements to full deinstitutionalization (Tøssebro et al., 2012). There was an intense debate on service models and closure of all long-stay institutions (Karlsson & Bolling, 2022; Katoda, 2014) that resulted in two Reports published by the Swedish Committee on Handicap (established in 1989) entitled Handicap, welfare and justice (1991) and One society for all (1992). This was the first wholescale closure of such facilities in the Western world. According to Tøssebro (2016), it was related to three factors: i) the representation of PwD as equal citizens of the welfare state; ii) the shift in considering institutions, from solutions unwanted but necessary to unwanted and unnecessary; ii) the rising voice of parental societies, formed alliances with politicians.

    15Therefore, it is not surprising that in the last decades of the Twentieth century some fundamental laws were approved establishing rules concerning support for PwD in Sweden: the Social Services Act (SoL, 1980 updated in 2001) applied to all citizens and the Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS, 1994) that gave to PwD certain «extra rights». The first is a goal-oriented framework law that gives municipalities great freedom to design their activities based on local conditions and all citizen’s needs, including PwD as special group among several others. It aims at providing for «regulations regarding the Social Services which, for the sake of democracy and solidarity, should promote the economic and social security of citizens, equality in living conditions and active participation in society». Persons with disabilities are entitled to assistance for a reasonable standard of living (SoL 4:1§).

    16A few years later, the need for specific legislation for persons with significant and lasting disabilities was investigated, and in 1994 LSS entered into force, specifying several rights for this target group, when supports according to SoL are not considered sufficient (Jormfeldt & Tideman, 2021). Specifically, this law guaranteed provision of welfare services and supports for three groups: i) persons with a learning disabilities, autism or autism-like conditions; ii) persons with «significant and lasting developmental disability or brain injury at adult age because of external violence or bodily illness», or iii) persons with «other lasting physical or psychological impairments that evidently is not due to normal aging, if they are great and cause significant difficulties in daily life and therefore constitute a significant need of support or service» (Riksdagsförvaltningen, 2018).

    17Based on the principles of the two previous Reports of the Committee on Handicap, LSS promotes equality in good living conditions and full participation in social life giving the individuals the opportunity to live like others (LSS 7§). According to these goals and the intensified academic debate, the pace of deinstitutionalization increased, and Sweden decided to close all institutions as a matter of public policy by the turn of the century (Grunewalkd, 2010).

    18Furthermore, to ensure deinstitutionalization, LSS introduced the figure of personal assistant to provide consumer-controlled supports and services3. As stated in the law – in conjunction with the Act concerning Assistance Compensation published the same year (LASS, 1994) which gave the user the legally guaranteed right to receive funds for personal assistance – this assistant is a hired professional to enable persons with extensive disabilities to have a «good quality of life», that is, to become more independent from their families, move out of institutions and become productive citizens (Ratzka, 1993).

    19The last persons to move out from institutions were those with «mental impairments» in compliance with the Psychiatric Reform (1995) with which individuals in mental health institutions were to move out into their own flats or group homes. The municipalities were given responsibility for providing occupation, housing support, and places where these individuals could meet.

    20Even in Sweden where the pattern of change in service models has generally been consistent as presented here, almost immediately after its implementation, politicians and others became worried that this regulatory framework and, in general, the new social welfare system was proving to be too expensive. Therefore, despite the empowering and inclusive aspirations embedded on a macrolevel, the effective implementation of the LSS’s goals address obstacles due to the rise of market-based approaches to service development (Mansell, 2005) relating to the budgets and bureaucracies of local municipalities, the discretion of local officials, and personal assistants’ decision making before ultimately affecting their intended recipients (Lewin et al., 2008).

    21Taken together, these changes and challenges provide the context within which the performance of community services and in general Swedish social welfare system for PwD is likely to be today «judged» calling for a more in depth understanding (Karlsson & Bolling, 2022).

    22From this background, drawing on semi-structured interviews with representatives of main Swedish disability organizations, this chapter aims to critically reflect on the state of the art of the de-institutionalization process in Sweden. Starting from the thematic analysis of the collected material, the paper underlines a double aspect: a. lights/shadows that the right of the PwD to choose their home has taken on in recent decades; b. further changes necessary to make this right effective.

    4. Study Design

    23The study uses fieldwork data from semi-structured interviews with nine representatives of the main Swedish disability organizations collected during an internship in the Independent Living Institute in Stockholm (ILI)4. A qualitative interpretive approach (Thorne, 2008) has been adopted to deeper understand the phenomenon of deinstitutionalization in Sweden and its positive/critical facets and its further possible implementations.

    24Data collection has been carried out through a guided discursive interview (Muylaert et al., 2014) that were subjected to a thematic analysis, properly chosen for this research, as it is a search for themes that emerged as being important to the description of the phenomenon (Green et al., 2008).

    4.1. Participants

    25This study explored the perspectives of nine representatives of the main Swedish disability organizations (see Table 1).

    Tab. 1: Participants Characteristics

    NAME

    ORGANISATION

    ID1

    A.R.

    Independent Living Institute of Stockholm (ILI)

    ID2

    J.B.

    Independent Living Institute of Stockholm (ILI)

    ID3

    K.W.

    Independent Living Institute of Stockholm (ILI)

    ID4

    M.S.

    Independent Living Institute of Stockholm (ILI)

    ID5

    R.K.

    Disability Ombudsman of the City of Stockholm

    ID6

    K.S.

    JAG - Cooperative of users of personal assistance

    ID7

    J.F.

    Stockholm Cooperative for Independent Living (STIL)

    ID8

    A.S.

    DHR - Participation Powew of action Freedom of movement

    ID9

    J.T.

    FUB - Swedish National Association for People with Intellectual Disability

    26The participants were selected by the researcher and ILI members, also based on personal availability. Each participant was informed about the study goals and the purpose of the interview, and each read and signed the informed consent.

    4.2. Data Collection

    27The guided discursive interview (Muylaert et al., 2014) allowed the researcher to immerse him/herself in his/her object of study, including collecting signs or indications of how the interviewees perceive and signify their reality. Within this study, a semi-structured interview protocol has been adopted inquiring the following areas:

    • general biographical and professional information;

    • conceptions and ideas of «deinstitutionalization» (past, present and future);

    • trends towards community-based services (positive/critical issues);

    • further strategic goals.

    28The nine interviews have been separately conducted in November 2021 (six in-person and three online).

    4.3. Data analysis

    29All interviews were listed and strictly transcribed by following the basic rules of clarity and completeness. The researcher manipulated the material as minimally as possible to highlight and recover the original meaning expressed by the participants.

    30The last stage concerned data interpretation. Thematic analysis, properly chosen for this research, is a search for themes that emerge as being important to the description of the phenomenon (Daly, Kellehear & Gliksman, 1997). The process involves the identification of themes through «careful reading and re-reading of the data» (Rice & Ezzy, 1999). This method is a flexible and easily accessible tool for analyzing unstructured qualitative data, like the ones analyzed here.

    31This thematic analysis followed a four-step process, adapted from Green and colleagues (2008):

    1. immersion: the researcher familiarized several times independently with the materials;

    2. coding: the initial analysis has been carried out by breaking down the transcripts into units according to the seven key elements of the UN Guidelines (2022);

    3. generation of themes: four dominant themes have been derived and rearranged from coding phase (see Table 2);

    4. categorizing: each transcript has been re-analyzed and coded according to the identified themes in order to carry out a comparative analysis.

    5. Dominant themes

    32Starting from the transcripts, a listed of dominant themes (DT) selected by the analysis will follow (see Table 2).

    Tab. 2: Dominant themes corresponding to UN key elements.

    DOMINATION THEMES (DT)

    UN GUIDELINES: KEY ELEMENTS (2022)

    DT1

    Deinstitutionalization:
    concept and process

    Institutionalization (A)

    Deinstitutionalization process (B)

    DT2

    Community inclusion
    and participation

    Accessible housing (F)

    DT3

    Self-determination.

    Respect for the right to choose
    and for individual will and preferences (C)

    Involvement of persons with disabilities
    in deinstitutionalization processes (G)

    DT4

    Service provisions

    Community-based support (D)

    Allocationof funding and resources (E)

    6. Results and discussions

    33This study aimed at identifying the state of the art of the process of deinstitutionalization in Sweden, its positive aspects, and shortcomings as well as its further strategic goals and developments. According to the literature, the research highlighted several issues associated with this phenomenon which will be presented below for each DTs.

    6.1. Deinstitutionalization: concept and process

    34Sweden has been recognized as a leading country in the deinstitutionalization. This idea emerged also from the interviewees who shared a common general understanding of this concept associated with the independent living right. This conception was firmly rooted in the art. 19 of the UN Convention on the Rights of Persons with Disabilities (2006) and related General Comment n.5 (art. 16).

    35However,

    «Twenty years have gone since Sweden closed the larger institutions due to breaches of human rights. Now Sweden is in a period when people are losing support due to cuts. Parents are not being granted support or little support for children with disabilities. Both these result in people being directed to institutions or having the threat of not being able to continue to live at home; smaller institutions or what are called group homes but none the less intuitions as per the definition of the CRPD» (ID2).

    36Looking at UN criteria

    «It is easy to see that most group homes can be regarded as institutions. The same goes for services like home care, foster homes, and to some extent, accompanying services. And they are increasing in numbers» (ID5).

    37Therefore, the process of deinstitutionalization in Sweden is currently going through a particularly critical moment. In this regard, Karlsson and Bolling (2022) argued that «even if Sweden formally has closed the large institutions, many disabled persons lack self-determination in daily life and opportunities to participate in the community. Institutional housing forms need to be complemented with individual housing solutions and personal support to create conditions for a self-determined life with equal opportunities as others, according to the CRPD» (p. 63).

    38Moreover, although existing Swedish laws supported deinstitutionalization and according to UN Guidelines (2022) it included interconnected processes, the regulatory framework «stuck on the 1990s» (ID1), in the years of the Social Services Act (SoL) and the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS).

    «Out of step with the times, with the crucial social changes happened last decades» (ID8).

    39In conclusion, according to the participants, deinstitutionalization is a concept used to describe the step away from residential institutions or institution-like solutions. However, looking at the recent set of diverging and complex developments of community-based services, this conception becomes vague (Emerson, 2000).

    6.2. Community inclusion and participation

    40According to the interviewees (almost all), independent living means that PwD are provided with all necessary means to ensure community inclusion and participation to enable them to exercise choice and control over and make all decisions concerning their lives. This right is enshrined in, among others, article 3 (c) of the UN Convention (2006) and its definition is reaffirmed in General Comment n.5 (2017). It includes «living a full social life and having access to all services offered to the public and to support services offered to persons with disabilities to enable them to be fully included and participate in all spheres of social life» (UN, 2017: art. 16).

    «Residential institutions force you to adapt your needs to the institution. The staff decides whose needs are most pressing. You become frustrated, passive, and depressed» (ID3).

    «
    Institutions make other people think we are different. Worse, institutions make us think we are different and, in this way, create self-fulfilling prophecies» (ID1).

    41Interviewees confirmed the idea that «aggregating persons leaving institutions into communal housing arrangements or in assigned neighborhoods, or bundling housing with medical or support packages, are incompatible with articles 19 and 18 (1) of the Convention» (UN, 2022). Research has shown that institutions cause discriminatory experiences, which can lead to a certain stigmatization, negative perception of the self-associated with declining initiative, skills, mental and physical health (Cayuela, 2021). Otherwise, deinstitutionalization and living as independently as possible improved lifestyle, developmental outcomes and PwD’s quality of life (Kozma, Mansell, & Beadle-Brown, 2009; Kim, Larson, & Lakin, 2001).

    6.3. Self-determination

    42Independent living is an essential part of the individual’s autonomy and freedom, and it does not necessarily mean living alone. It should also not be interpreted solely as the PwD’s ability to carry out daily activities by oneself, rather the opportunity to choose, make decisions, express preferences, and have control of their lives. According to this,

    «Personal autonomy and self-determination are fundamental to living independently» (ID4).

    «
    Independent Living means that we demand the same choices and control in our everyday lives, just as everybody else. We are the best experts on our needs» (ID1).

    43Research demonstrated that day-to-day choices are significantly more available to former institution residents after deinstitutionalization (Robertson et al., 2001) and compared with peers who remained in the same institutions (Stancliffe & Abery, 1997). Nevertheless, the participants confirmed that there are still significant shortcomings in the possibility of self-determination for PwD, especially those with intellectual/multiple disabilities (Jormfeldt & Tideman, 2021; Talman et al., 2021). Regarding this, scholars argued that changes in administrative procedures appear to have reduced the influence of PwD’ organizations regarding the size of group homes, for instance, and reports suggest low and even decreasing levels of self-determination (Söderström & Tøssebro, 2011). Speaking of living arrangements, although persons with intellectual disabilities living in smaller community-based residential settings generally experience greater choice than residents in larger, more institutional settings, such choice is not an inevitable concomitant of deinstitutionalization and rarely extends to major life choices, such as where and with whom to live (Robertson et al., 2001). Other factors have been associated with greater choice: smaller size of home (Tøssebro, 2016); being supported in independent or supported living schemes (Robertson et al., 2001); and living in a less intensively staffed environment (Stancliffe & Abery, 1997). However, the factors having the most consistent and robust association with resident choice are resident ability (Stancliffe & Abery 1997; Robertson et al., 2001).

    6.4. Service provisions

    44This fourth DT represents the most thoroughly explored topics in the transcripts. According to the interviewees, both independent living and being included in the community refer to life settings outside residential institutions (of all kinds) supported by specific services. Nevertheless, in Sweden this is not the case for all the PwD.

    «It depends on the benefits they received» (ID7).

    «
    Some persons live by themself, but others live in special institutions, smaller and community-based» (ID8).

    45During the last decades, due to financial cuts, in Sweden PwD, who «previously lived independent lives, able to partake in society due to their personal assistance, are today forced to make do with institutional solutions. The number of people with disabilities, dependent on limited home services instead of personal assistance, are increasing. Municipalities are continuously building new group home facilities. Even orphanages are under construction. And this just because parents succumb when they receive no support. This is a most disturbing development, with no regard to Sweden’s commitments to the UN» (Karlsson & Bolling, 2022: p. 6). In this sense,

    «Community-based services are a first solution, not “the solution”» (ID5).

    46As stated by Karlsson and Bolling (2022), this is even more true for persons with cognitive impairments, autism, and acquired brain injury who are still the main group applying for housing of varying group types, where a staff group provides the support. Sandvin (1996) called this process «de-differentiation»: the loss of special, separate policies and service structures for persons with intellectual disabilities and their replacement by general policies and structures.

    47According to the participants,

    «Intellectual disability still represents a label» (ID9).

    «
    A great number of persons with intellectual disabilities live in group homes, smaller living institutions but still institutions» (ID8).

    48Furthermore,

    «The problem concerns that not only institutions are up and running, but they are also increasing in numbers» (ID7).

    49Data confirm this argument: in October 2020, more than 30,000 children and adults were granted housing with special services. Only 634 adults were granted “other specially adapted housing”, which gives the possibility to organize daily life with the support of individual support services such as personal assistance (Socialstyrelsen, 2021).

    50This is at best a mixed picture and suggests that problems of implementation are important even in new service models (Mansell, 2006), because

    «It is not “just” about living in a particular building or setting; it is, first and foremost, about not losing personal choice and autonomy» (ID2).

    «
    Neither large-scale institutions with more than a hundred residents nor smaller group homes with five to eight individuals, nor even individual homes can be called independent living arrangements if they have other defining elements of institutions or institutionalization» (ID1).

    51In this sense, according to Kozma, Mansell and Beadle-Brown (2009), just moving PwD out of institutions into community settings does not bring automatically to improve their quality of life in terms of choice, self-determination, participation, and inclusion. This latter aspect is linked to another crucial idea emerged:

    «The possibility for participation and self-determination are influenced by their living arrangements» (ID4).

    52An increasing number of evidence-based research states that variation in the performance of community-based services also reflects characteristics of the design of the services themselves (Mansell, 2006). The scholars have been offered two main interpretations for this failure of the initial promises of deinstitutionalization and community-based services and supports (Mansell & Ericsson, 1996). Some authors have argued that the ideology of institutions persists in group homes and can only be overcome by a further move to supported living (Stevens, 2004); others have pointed out that variable outcomes resulted by weak implementation (Mansell, McGill & Emerson, 2001).

    53Indeed, although residential settings can differ in size, name, and set-up, for all the interviewees some critical aspects of service provision still exist. According to the literature, they could be summed up as follow: i) isolation and segregation from independent life within the community; ii) lack of control over day-to-day decisions (limited to specific areas of life); ii) lack of choice over whom to live with; iv) rigidity of routine irrespective of personal will and preferences; v) paternalistic approach in service provision; vi) staff skills.

    54These shortcomings, combined with the todays increasing numbers of residential or institution-like solutions, lead the interviewees to

    «Fear for re-institutionalization» (ID1; ID2; ID3; ID5; ID6; ID8).

    «
    Fear of how persons with cognitive impairments would be treated, risk for trafficking, drugs, and loneliness in the community» (ID9).

    55This concern is the same one reported by EU FRA series (2017; 2020).

    56In conclusion, included in the service provisions, personal assistant plays a crucial role and refers to person-directed, “user”-led human support available to a PwD (UN, 2017). In this sense, this figure represents a fundamental tool for independent living, and, in the Nineties, it made possible to initiate and implement the process of deinstitutionalization in Sweden (Clevnert & Johansson, 2007; Ratzka, 1986). This image of Swedish personal assistant has been underpinned by statistical data witnessing a constantly rising relative number of personal assistant-recipients from the introduction of LSS in 1994 up until about 2010–2011 (Rauch, Olin & Dunér, 2018). According to the participants,

    «Austerity measures occurred downscaling the role of personal assistant and the possibilities to PwD to have access to this support» (ID6).

    «
    Persons with intellectual disabilities don’t have the right to personal assistance» (ID9).

    57Implementing the cost-cutting measures causes severe consequences for PwD who bear the brunt by being excluded from participation in society and the pioneeristic social policy values are traded for economic austerity goals (Berggren, Emilsson & Bergman, 2021). This phenomenon has a double consequence. On the individual level, we will see that an ever-larger number of PwD will have to turn to municipal service alternatives, which do not have the capacity or quality to fully satisfy their support needs (Näsman, 2016). As a result, a large group of disability population and their relatives will be exposed to increased familial dependency, a low level of agency and consequently reduced life chances both in economic and other terms (Näsman, 2016; NBHW, 2017). Overall, there will also be consequences on the societal level, both in terms of inequality and economic sustainability (von Granitz et al., 2017).

    7. Conclusion and future challenges

    58During the last part of the 20th century, deinstitutionalization has become a pervasive trend in a few countries. However, this overall international tendency does not preclude important dissimilarities across sectors or between countries. This gap between policy goals and service provisions clearly emerged from the present qualitative study.

    59Indeed, the UN Convention on the Rights of Persons with Disabilities and Swedish regulatory framework, not least the Social Services Act and the Act on Support and Service for Certain Disabled Persons (LSS), provide support for independent living opportunity for PwD, but their application has later been tightened to a ways that for many have worsened the conditions to be able to fully experience this right (Tideman & Tøssebro, 2002). These reforms have led to the closure of institutions and Pwd’s quality of life have slowly improved, but significant differences remain between living conditions for persons with intellectual disabilities and those for the rest of the population (Tideman, 2000; Ringsby Jansson & Olsson, 2006; Tøssebro et al., 2012). A sort of «two-speed deinstitutionalization» (Jormfeldt & Tideman 2021; Talman et al. 2021).

    60This complex phenomenon represents what Grob (1995) called the «paradox of deinstitutionalization»; what the UN Guidelines (2022) are trying to address, orient and resolve today. A present on which the risk of re-institutionalization looms (Karlsson & Bolling, 2022), as emerged significantly from the voices of the representatives of the main Swedish disability organizations. Precluding this danger requires to put disability and the related knowledge on human rights as well as the deinstitutionalization process at the center of the political, cultural, and social debate (Tøssebro, 2016).

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    Notes de bas de page

    1 Esping-Andersen (1990) distinguished three ideal types of capitalist welfare state: the social-democratic, liberal and conservative. This tripartite model has been discussed, criticized and according to some outdated over time.

    2 The concept of normalization includes an original practical version and later and more famous principles (Nirje, 1969). The practical version was a response to unmet needs and waiting lists. Some politicians argued that it was too expensive to simply rely on institutions; instead, one should aim to change general services in order to care for more people in the community. Subsequently, normalization became an umbrella term for all types of criticisms of institutions and came to include points related to lifestyles, lifecourse developments, daily routines (Nirje, 1969) and social role valorisation (Wolfensberger, 1972).

    3 Swedish in-home personal assistance programs date back to the beginning of the last century when such services had been enstablished as small and informal mutual insurance schemes at the neighborhood level or organised by local movemnts. To delve into its historical perspective, see Ratzka (1986).

    4 The internship period at the Swedish Independent Living Institute (ILI; https://www.independentliving.org/docs7/internship-independent-living-center-stockholm-2021-mabel-giraldo.html) took place during a Visiting Research Fellow program at Stockholm University (Department of Special Education, from October to November) granted by “Supporting Talented Researchers – action 2, 2020” of the University of Bergamo. Therefore, I would like to thank Adolf Raztka and Jamie Bolling, former and actual Directors of the Independent Living Institute of Stockholm, for sharing contacts, materials, ideas and documents.

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    • Mabel Giraldo

      Researcher, University of Bergamo (Italy)

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    1 Esping-Andersen (1990) distinguished three ideal types of capitalist welfare state: the social-democratic, liberal and conservative. This tripartite model has been discussed, criticized and according to some outdated over time.

    2 The concept of normalization includes an original practical version and later and more famous principles (Nirje, 1969). The practical version was a response to unmet needs and waiting lists. Some politicians argued that it was too expensive to simply rely on institutions; instead, one should aim to change general services in order to care for more people in the community. Subsequently, normalization became an umbrella term for all types of criticisms of institutions and came to include points related to lifestyles, lifecourse developments, daily routines (Nirje, 1969) and social role valorisation (Wolfensberger, 1972).

    3 Swedish in-home personal assistance programs date back to the beginning of the last century when such services had been enstablished as small and informal mutual insurance schemes at the neighborhood level or organised by local movemnts. To delve into its historical perspective, see Ratzka (1986).

    4 The internship period at the Swedish Independent Living Institute (ILI; https://www.independentliving.org/docs7/internship-independent-living-center-stockholm-2021-mabel-giraldo.html) took place during a Visiting Research Fellow program at Stockholm University (Department of Special Education, from October to November) granted by “Supporting Talented Researchers – action 2, 2020” of the University of Bergamo. Therefore, I would like to thank Adolf Raztka and Jamie Bolling, former and actual Directors of the Independent Living Institute of Stockholm, for sharing contacts, materials, ideas and documents.

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    Giraldo, M. (2024). Deinstitutionalization in Sweden: lights and shadows of an ongoing process from the perspective of some disability organizations. In I. Hachez & N. Marquis (éds.), Repenser l’institution et la désinstitutionnalisation à partir du handicap. Bruxelles: Presses universitaires Saint-Louis Bruxelles. https://doi.org/10.4000/books.pusl.29552
    Giraldo, Mabel. « Deinstitutionalization in Sweden: Lights and Shadows of an Ongoing Process from the Perspective of Some Disability Organizations ». In Repenser l’institution Et La désinstitutionnalisation à Partir Du Handicap, édité par Isabelle Hachez et Nicolas Marquis. Bruxelles: Presses universitaires Saint-Louis Bruxelles, 2024. doi:10.4000/books.pusl.29552.
    Giraldo, Mabel. « Deinstitutionalization in Sweden: Lights and Shadows of an Ongoing Process from the Perspective of Some Disability Organizations ». Repenser l’institution Et La désinstitutionnalisation à Partir Du Handicap, édité par Isabelle Hachez et Nicolas Marquis, Presses universitaires Saint-Louis Bruxelles, 2024, https://doi.org/10.4000/books.pusl.29552.

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    Hachez, Isabelle, et Nicolas Marquis, éd. Repenser l’institution et la désinstitutionnalisation à partir du handicap. Bruxelles: Presses universitaires Saint-Louis Bruxelles, 2024. doi:10.4000/books.pusl.29057.
    Hachez, Isabelle, et Nicolas Marquis, éditeurs. Repenser l’institution et la désinstitutionnalisation à partir du handicap. Presses universitaires Saint-Louis Bruxelles, 2024, https://doi.org/10.4000/books.pusl.29057.
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