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Disability, socialism and autonomy in the 1970s: case studies from Denmark, Sweden and the United Kingdom

RYDSTRÖM, Jens
2019

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n the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between ‘impairment’ and ‘disability’. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life.

  • In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability.
  • This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people.
  • Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom.
  • The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all.

“With CO-OP I’m the boss” – experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida

OHRVALL, Ann-Marie
BERGQVIST, Lena
HOFGREN, Caisa
PENY-DAHLSTRAND, Marie
May 2019

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Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.

 

Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.

 

Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.

 

Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.

Return to work predicts perceived participation and autonomy by individuals with stroke

Westerlind, Emma
Persson, Hanna C
Tornbom, Karin
SUNNERHAGEN, Katharina S
May 2019

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Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.

 

Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.

 

Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.

 

Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.

Feasibility of Family Group Conference to promote return-to-work of persons receiving work disability benefit

BRONGERS, Kor A
CORNELIUS, Bert
ROELOFS, Pepijn D D M
VAN DER KLINK, Jac J L
BROUWER, Sandra
April 2019

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Purpose: To investigate the feasibility of Family Group Conference for promoting return to work by clients receiving work disability benefits from the Social Security Institute in the Netherlands.

 

Methods: We conducted a mixed-method pre- post-intervention feasibility study, using questionnaires, semi-structured interviews and return to work plans drafted in Family Group Conferences. A convenient sample of Labour experts, Clients, and Facilitators was followed for a period of six months. Feasibility outcomes were demand, acceptability, implementation and limited efficacy of perceived mental health and level of participation.

 

Results: Fourteen labour experts and sixteen facilitators enrolled in the study. Of 28 eligible clients, nine (32%) participated in a Family Group Conference. About 78% of the Family Group Conferences were implemented as planned. Participant satisfaction about Family Group Conference was good (mean score 7). Perceived mental health and level of participation improved slightly during follow-up. Most actions in the return to work plans were work related. Most frequently chosen to take action was the participating client himself, supported by significant others in his or her social network. Six months after the Family Group Conference five participating clients returned to paid or voluntary work.

 

Conclusions: Family Group Conference seems a feasible intervention to promote return to work by clients on work disability benefit. Involvement of the social network may have added value to support the clients in this process. An effectiveness study to further develop and test Family Group Conferences is recommended.

The use of information and communication technology in healthcare to improve participation in everyday life: a scoping review

ZONNEVELD, Michael
PATOMELLA, Ann-Helen
ASABA, Eric
GUIDETTI, Susanne
April 2019

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Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.

 

Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.

 

Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.

 

Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Self-perceived mobility in immigrants in Sweden living with the late effects of polio

SALANDER, Helena
KJELLGREN, Felicia
SUNNERHAGEN, Katharina S
March 2019

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Purpose: To investigate outdoor mobility of immigrants in Sweden who are living with the late effects of polio.

 

Materials and methods: A total of 145 patients with late effects of polio born outside the Nordic region were identified at an outpatient polio clinic. Of these, 74 completed a questionnaire about their mobility and independence in daily life, self-perceived pain and depression, vocational status, mobility assistive devices/aids, transportation modes and driving. Patient characteristics were based on medical records supplied by physicians.

 

Results: Twice as many patients had lower extremities that were affected by polio than upper extremities. This affected their use of different transport modes and caused mobility and transfer problems. Indeed, 39% needed mobility aids and help from another person to move outdoors. Those who reported dependence for outdoor mobility were more often unemployed and more often depressed.

 

Conclusions: Many respondents reported having difficulties with transport mobility, but a large proportion, 57%, were independent and active drivers. It is important to consider outdoor mobility when planning rehabilitation for patients with late effects of polio and foreign backgrounds. In addition to psychosocial factors, dependence on mobility-related activities can lead to dependency and isolation.

Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records

BACKMAN, Ellen
GRANLUND, Mats
KARLSSON, Ann-Kristin
February 2019

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Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.

 

Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.

 

Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”.

 

Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.

Identifying and validating housing adaptation client profiles – a mixed methods study

LUTHER, Anna
CHIATTI, Carlos
EKSTAM, Lisa
THORDARDOTTIR, Bjorg
MALMGREN FANGE, Agneta
February 2019

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Purpose: An increasing number of people will live with disabilities in their homes and consequently, the need for home-based interventions will increase. Housing adaptations (HAs) are modifications to the physical home environment with the purpose to enhance independence for a heterogeneous group of people. Increasing the knowledge of the characteristics of HA clients by exploring their heterogeneity, could facilitate the planning of interventions and allocation of resources. The purpose of this article was to identify and validate HA client profiles.

 

Materials and methods: This cross-sectional study applied a mixed methods design to identify profiles of HA clients through cluster analysis confirmed by qualitative interview data. The sample consists of 241 HA clients in Sweden with a mean age of 75.1 years.

 

Results: A classification into five groups emerged as the one best describing the heterogeneity of characteristics among this sample of clients. Five client profiles were outlined based on their age and level of disability, and the variation between the profiles was confirmed through the qualitative interview data.

 

Conclusions: The identified client profiles are a step towards a better understanding of how home-based interventions could be delivered more effectively to groups of HA clients, based on their different characteristics.

Leaving No One Behind: A Nordic movement for change

Kroglund, Andrew
January 2019

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This report assesses the policies of the Nordic country governments on international disability issues following the Global Disability Summit in London, July 2018. The SDGs requirement for new focus on inclusion is highlighted and the report aims to strengthen the cooperation between civil society organisations and government in order to fulfill the ambitious 2030 agenda

Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study)

SVERKER, Annette
THYBERG, Ingrid
VALTERSSON, Eva
BJORK, Mathilda
HJALMARSSON, Sara
OSTLUND, Gunnel
January 2019

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Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.

 

Methods: Fifty-nine patients (age 18–63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the type of situations described and later on, categories based on quality aspects of participation were developed.

 

Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.

 

Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.

Inclusive Classroom Profile (ICP): a cultural validation and investigation of its perceived usefulness in the context of the Swedish preschool

LUNDQVIST, Johanna
LARSDOTTER BODIN, Ulrika
2018

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The Inclusive Classroom Profile (ICP) is a structured observation instrument. It has been developed to support high-quality early childhood inclusion of children with special educational needs and disabilities. The aim of this study is to examine the cultural validity of the instrument in Swedish preschools and to investigate its perceived usefulness in a Swedish preschool context. Ten special educators, who conducted professional dialogues with preschool teachers and other preschool staff members in a Swedish municipality, were enrolled. The instrument was compared with the Swedish national curriculum for the preschool, and the perceptions of special educators were collected by way of dialogue seminar method. Thematic analyses were conducted. The results of the study show that the instrument, with few exceptions, is valid in Sweden, and that the instrument can be useful for special educators conducting professional dialogues about early childhood inclusion with preschool teachers and other preschool staff members. The study has relevance for those who work with early childhood inclusion in Sweden as well as elsewhere, and for those who plan to validate the instrument and investigate its perceived usefulness in a context pertinent to them. High-quality inclusion is on the agenda in many nations, and a Sustainable Development Goal.

Adaptations from the prosthetic and intact limb during standing on a sway-referenced support surface for transtibial prosthesis users

RUSAW, David F
2018

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Purpose: 

To investigate the bilateral postural adaptations as a result of standing on an increasingly unstable sway-referenced support surface with both the intact and prosthetic limb for transtibial prosthesis users (TPUs).

 

Method: 

TPUs (n = 14) and matched controls (n = 14) stood quietly in multiple foot placement conditions (intact foot, prosthetic foot and both feet) on a sway-referenced support surface which matched surface rotation to the movement of the centre of pressure (CoP). Force and motion data were collected and used to analyse CoP mean position, displacement integral and force components under intact and prosthetic limbs.

 

Results: 

Significant differences were found between prosthesis users and controls in CoP mean position in anteroposterior (1.5 (95% CI, 1.2–1.8) cm) and mediolateral directions (3.1 (95% CI, 0.5–5.7) cm. CoP displacement integrals were significantly different greater for prosthesis user group in the anteroposterior direction. Force components differences were found in all planes (anteroposterior: 0.6 (95% CI, 0.4–0.8 N); mediolateral: 0.1 (95% CI, 0.0–0.2 N & 0.3 (95% CI, 0.2–0.4) N, inferosuperior: 2.2 (95% CI, 1.4–3.0) N).

 

Conclusions: 

TPUs have bilateral static and dynamic postural adaptations when standing on a sway-referenced support surface that is different to controls, and between prosthetic and intact sides. Results further support evidence highlighting importance of the intact limb in maintenance of postural control in prosthesis users. Differences indicate clinical treatment should be directed towards improving outcomes on the intact side.

Support persons’ views on remote communication and social media for people with communicative and cognitive disabilities

BUCHHOLZ, Margret
FERM, Ulrika
HOLMGREN, Kristina
November 2018

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Purpose: The purpose of this study was to explore support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.

 

Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology.

 

Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons’ dedication to the users’ right to communicate.

 

Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users’ communication situation.

2030 Agenda for sustainable development: Selected SDG indicators disaggregated by disability status

WASHINGTON GROUP ON DISABILITY STATISTICS
October 2018

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In light of the importance of disability data collection and the disaggregation of Sustainable Development Goal (SDG) outcome indicators by disability status, the Washington Group on Disability Statistics (WG) undertook an exercise to review, among WG member countries, the extent to which data on SDG indicators currently available can be disaggregated by disability status. Requests for disaggregated SDG data for 13 selected indicators were sent to 146 member countries. 48 countries responded and 39 provided data. Response data is tabulated and discussed.

Making it work: experience of living with a person who falls due to multiple sclerosis

CARLING, Anna
NILSAGARD, Yiva
FORSBERG, Anette
October 2018

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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS).

 

Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis.

 

Results: The overall theme “Making it work” represents the next of kin’s struggle to make life work. It comprises three themes: “Taking responsibility”, “Making adjustments”, and “Standing aside for someone else”. The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up.

 

Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person’s occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

Lost in digitalization? Municipality employment of welfare technologies

FRENNERT, Susanne
2018

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Introduction:

Swedish municipalities face a number of daunting challenges; an aging population, the public’s increased demands and expectations on municipality services, and a strained economy to mention some. Welfare technology, a Scandinavian concept launched to promote digitalization, is seen as one solution to meet these challenges.

 

Objective: 

Despite these promises, few welfare technology applications are offered by local Swedish municipalities and care organizations. Numerous studies have shown that Swedish municipalities have a great interest in welfare technologies.

 

Methods: 

In this article, we draw on empirical research in one Swedish municipality. Through two case studies it is illustrated how technological change and municipality employment of welfare technologies are employed.

 

Results: 

These case studies show how core values of care are being lost in the quest for digitalization due to the lack of organizational skills and knowledge in transforming the relationship of caregiving and care-receiving through the use of digital technology.

 

Conclusions: 

Digitalization and welfare technologies deployed ought to represent and support the core values of caregiving and to receive care. Thus, digital transformation most likely will transform conditions for care receivers and working conditions for care workers. New work processes will evolve, which in turn produce new meanings of home help service work and caregiving.

Everyday life in older men living alone – a complex view needing a biopsychosocial perspective

VON HEIDENKEN WAGERT, Petra
NYGARD, Susanne
CEDERBOM, Sara
June 2018

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Purpose: To explore how older men living alone, describe their everyday activities and their abilities as well as how they could be helped in everyday life.

 

Materials and methods: Qualitative semi-structured interviews were analysed with inductive content analysis. Eight men aged 65+ years were included. They were all living alone, albeit with home help services. They were able to walk and had sufficient cognitive ability.

 

Results: The analysis resulted in one theme “A driving force of managing activities and overcome hindering factors requires a broad spectrum of prerequisites for participating in everyday life” with the following four categories: Importance of everyday activities; individual prerequisites enabling everyday activities; body and mind inhibit, and react to the decreased, abilities; and importance of the environment.

 

Conclusions: The results generate a complex view of older men’s everyday life. It is important for older men’s independence that health care and rehabilitation staff adopt a comprehensive view and work from a biopsychosocial (BPS) perspective.

Employers’ views on disability, employability, and labor market inclusion: a phenomenographic study

STRINDLUND, Lina
ABRANDT-DAHLGREN, Madeleine
STAHL, Christian
June 2018

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Purpose: This study aims to increase our understanding of employers’ views on the employability of people with disabilities. Despite employers’ significant role in labor market inclusion for people with disabilities, research is scarce on how employers view employability for this group.

 

Methods: This was a qualitative empirical study with a phenomenographic approach using semi-structured interviews with 27 Swedish employers from a variety of settings and with varied experience of working with people with disabilities.

 

Results: The characteristics of employers’ views on the employability of people with disabilities can be described as multifaceted. Different understandings of the interplay between underlying individual-, workplace-, and authority-related aspects form three qualitatively different views of employability, namely as constrained by disability, independent of disability, and conditional. These views are also characterized on a meta-level through their association with the cross-cutting themes: trust, contribution, and support.

 

Conclusions: The study presents a framework for understanding employers’ different views of employability for people with disabilities as a complex internal relationship between conceived individual-, workplace-, and authority-related aspects. Knowledge of the variation in conceptions of employability for people with disability may facilitate for rehabilitation professionals to tailor their support for building trustful partnerships with employers, which may enhance the inclusion of people with disabilities on the labor market.

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