Therapy or human right? The meaning of recreation for children and youth with disabilities in the “Krembo Wings” youth movement

Therapy or human right? The meaning of recreation for children and youth with disabilities in the “Krembo Wings” youth movement

ARTICLE IN PRESS Disability and Health Journal - (2016) - www.disabilityandhealthjnl.com Research Paper Therapy or human right? The meaning of ...

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ARTICLE IN PRESS

Disability and Health Journal

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(2016)

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www.disabilityandhealthjnl.com

Research Paper

Therapy or human right? The meaning of recreation for children and youth with disabilities in the ‘‘Krembo Wings’’ youth movement Michal Soffer, Ph.D., M.S.W.a,*, and Michal Almog-Bar, Ph.D., M.S.W.b a

School of Social Work, Faculty of Social Welfare & Health Sciences, 199 Abba Hushi Blvd., Mount Carmel, Haifa 3498838, Israel b The Paul Baerwald School of Social Work and Social Welfare, The Hebrew University, Mt. Scopus, Jerusalem 9190501, Israel

Abstract Background: Research shows that leisure or recreation promotes health, quality of life and wellbeing. Participation in leisure is also a fundamental right of people with disabilities. Studies report disparities in leisure participation between children and youth with and without disabilities. Youth movements are a form of leisure activity, and are of particular importance in Israeli society. Objective: In this study we set out to explore how the youth movement Krembo Wings (KW) outlines the meanings of recreation for children and youth with disabilities. Our theoretical framework centers on the critical perspective of a disability study committed to disability rights. Methods: We conducted a qualitative study of KW. Data were drawn from multiple sources: published and unpublished documents, website materials, and semi-structured interviews with various key people in the movement. Data were analyzed through directed content analysis and were categorized into either the biomedical model or the social model of disability. Results: Most of our findings show that KW adopts a biomedical understanding of disability. Nonetheless, indicators of the social model, though few, were also evident. Conclusions: Although the biomedical model was found to be dominant in Israel, there are promising indicators of change. Our somewhat mixed findings might suggest that KW is at a transitional phase between biomedical thinking and a more rights-based approach. Ó 2016 Elsevier Inc. All rights reserved. Keywords: Qualitative study; Therapeutic recreation; Biomedical model; Social model; Youth movements; Israel

Research shows that leisure or recreationc can promote various aspects of health, including physical, social, and psychological health, through a variety of mechanisms.1e3 Participation in leisure is also a fundamental right of people with disabilities; section d of Article 30 (Participation in Cultural Life, Recreation, Leisure and Sport) of the UN Convention on the Rights of People with Disabilities (CRPD) obligates state parties ‘‘[t]o ensure that children with disabilities have equal access with other children to participation in play, recreation and leisure and sporting activities, including those activities in the school system.’’ Conflict of interest statement: The authors whose names are listed above certify that they have no affiliations with or involvement in any organization or entity with any financial interest, or non-financial interest in the subject matter or materials discussed in this manuscript. * Corresponding author. Tel.: þ972 4 8240829; þ972 54 5862553. E-mail address: [email protected] (M. Soffer). c In this paper we use leisure and recreation interchangeably as ‘‘the most widespread definition, and the most acceptable to providers of leisure is that recreation is activities in which people participate during their leisure time’’ (see, Torkildsen, G. 2005. Leisure and Recreation Management. New York: Routledge, p. 51). 1936-6574/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.dhjo.2016.04.001

Lord and Stein4 argue that this right has been largely ignored by human rights scholars and practitioners, although it is ‘‘a vehicle for inclusion and a social change conveyor.’’ Many studies show that children with disabilities participate less in recreational activities than those without disabilities. They also report social and physical barriers to participation.5e10 Youth movements (YM) are argued to be a form of leisure activity.11 ‘‘A YM is a particular type of youth organization, with an explicit political, religious or social agenda’’12 (p. 223). In Israel, YM are informal educational organizations. They are run by youth, and guided by defined principles. Membership is voluntary.13 There are thirteen ‘‘official’’ YM in Israel, i.e., they conform to various criteria as laid out by the Ministry of Education, which supports them.13,14 The importance of YM in Israeli society stems from their role in nation-building in the pre-State era (before 1948).15 The extent and impact of these movements are considered a unique characteristic of Israeli society.13 Although no official data exist regarding the participation of children and youth with disabilities in Israeli YM,

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there is a widely-held consensus that they are definitely excluded from such activities.16 Only in 2014 was a national program launched for integrating children and youth with disabilities in nine YM. Against this background, Krembo Wings (KW), the focus of our study, was established in 2002. It defines itself as a YM. However, it does not meet the eligibility criteria for the Ministry’s support because of its relatively low number of members. KW’s self-definitions are sometimes contradictory. For example, the movement’s Internet homepage defines it as both a ‘‘movement for youth with special needs’’ and ‘‘a YM for children with and without disabilities, the first and only of its kind in the world.’’ While the latter statement could be contested, it remains true that KW is a unique phenomenon in Israel. It is recognized for its excellence and leadership, having received several prestigious awards. KW was established ‘‘to address the social isolation of children with disabilities, particularly those with severe disabilities.’’ The impetus for KW comes from Kfir Kobi, his family and his helper. Kfir was born in Jerusalem, Israel in 1996, and was diagnosed with severe Cerebral Palsy (CP). When he was three years old, his mother gave birth to another child and sought outside assistance, a volunteer, to spend time with the baby. A 12-yearold girl, Adi Altschuler, approached her, and insisted on playing with Kfir, rather than the baby. Kfir and Adi quickly learned to understand each other, establishing a strong connection, and spending more time together at home and in outdoor activities. When Adi was 16 she joined (LEAD), a training program in leadership skills. As part of her training, she needed to create, plan and implement a social project in her local community. Based on her experience with Kfir and similar families whom she had met during her four years volunteering at the Kobis’ home, in 2002 Adi established a social group of children with disabilities, in collaboration with Kfir’s parents and other LEAD participants. They met regularly for social activities, supervised by a non-disabled teenager. From 2002 to 2009, eight similar groups were established around Israel. As of 2015, KW operates over 50 branches nationwide, with over 4000 members.17 Members meet at least once weekly, for 3 h, in the afternoon. The meetings include accessible activities focusing on, e.g., art, theater, cooperation and conflict, countries and cultures, and Jewish and Muslim holidays. Additional activities include the annual opening; distribution of movement uniforms; heritage activities; holidays and graduation events, summer camp, and the ‘‘wings parade,’’ during which the KW badge is awarded to the members with disabilities. KW also offers summer camps, hiking and camping, and sports activities, similar to other Israeli YMs. In this study we set out to explore how KW socially constructs (or defines) recreation for children and youth with disabilities.

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Theoretical framework Our theoretical framework centers on the critical perspective of a disability study committed to disability rights. The social model (or ‘‘minority group’’ model)18 of disability is widely held among scholars. It perceives disability as a socio-cultural construct, a product of the oppressive socio-cultural structure and, therefore, argues for changing disabling mechanisms, i.e., discriminatory social structures19 and the attainment of civil rights.18 The social model contrasts with the biomedical model of disability which perceives disability as a physical phenomenon, a deficit or limitation inherent to the person, who is, therefore, an object of care and treatment.18e20 It has been argued that, while therapeutic recreation (TR) and disability studies hold a similar commitment to people with disabilities, to supporting their right to full inclusion in recreation, they seldom intersect.21 Sylvester22 argues that this is extremely unfortunate, as recreation inclusion is part and parcel of TR. Recreation inclusion e ‘‘full standing within recreation environments’’23 e also aligns with the approach of disability studies. Various scholars have criticized TR’s inclination toward the biomedical model of disability, especially in the United States.21,22,24e28 Genoe and Whyte21 argue that TR should engage in political, rather than clinical, practice: ‘‘. in the process, therapeutic recreation discards the ‘white coat’ for leisure better suited for resisting stigmatization and discrimination and for reclaiming respect, dignity, and relational autonomy and self-determination’’ (p. 186). This concept of political TR practice resonates with the social model of disability. It goes beyond an individual approach (focusing on functional abilities, rehabilitating the individual and recovery) to addressing disabling factors in the environment. In this study we reclaim the connection between TR and disability studies.29 The present study set out to explore how KW assigns meanings to recreation for children and youth with disabilities. Specifically, we examine whether recreation is framed through the biomedical model (recreation as therapy) or the social model of disability (recreation as a human right).

Methods Qualitative research methods were employed in order to test how KW defines meanings for recreation for children and youth with disabilities. In order to achieve a deeper understanding of the studied phenomenon, and obtain more and better evidence that will allow us to interpret it, we sampled data from various sources.30,31 Documents and website KW’s extensive website allowed access to plentiful written materials. Its administration provided further material.

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These documents included the minutes of internal and external meetings, unpublished information about the organization, mass media reports about it, Power Point presentations, the final report of a survey conducted with youth counselors (and the raw data it used), and detailed written feedback from youth counselors (reflections and insights about their experiences in KW). Semi-structured interviews Eight participants (founders, board members, and senior staff of KW) completed semi-structured person-to-person interviews with the second author. All interviews were audio-recorded and later transcribed. The closelyfollowed interview protocol consisted of background questions and open-ended queries concerning the establishment and modus operandi of KW. The study received the approval of the Institutional Review Board (The Hebrew University of Jerusalem, Israel). Data analysis Qualitative content analysis was used on the data. Specifically, we employed ‘‘directed content analysis,’’ which determines categories according to a theory.32 However, as in all studies that employ this method, we also allowed for other themes to emerge.32 The coding categories were derived from the data through a process of constant comparison.33 The codes created were then compiled into two meaningful thematic clusters: the biomedical model of disability and the social model of disability.34 In order to ensure the consistency of the coding process, a manual was developed and tested on a sample of the data prior to coding the entire data set.35 Finally, we determined the themes and categories that emerged from the data.36 At this stage, we attempted to identify the social, cultural, and political contexts within which the derived themes and categories were constructed and used.37 With regard to the trustworthiness of the study, we employed triangulation of the data, and peer debriefing between the authors was used as the primary vehicle for ensuring that the criterion of credibility was addressed.36 In addition, we kept an audit trail throughout the data analysis process which clearly described the steps taken, enabling us to follow our research procedures consistently.38

Results Biomedical model of disability The vast majority of the data showed that KW’s understanding of recreation for children and youth with disabilities is based on an individual, biomedical or charity model of disability.

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Biomedical imagery was evident in the name of the YM; Krembo (literal translation: ‘‘cream on the inside’’ or ‘‘cream within’’) is a popular Israeli sweet, a chocolatecovered marshmallow-like cream on a cookie. A KW pamphlet from January 2013 states that ‘‘Krembo is an Israeli sweet that is hand-wrapped because of the care needed in handling it. Similarly, we treat each of our trainees with gentleness and sensitivity, and help him/her spread their wings.’’ Although this metaphor, which likens children with disabilities to fragile sweets, may seem positive at first, it reflects cultural representations of both children and people with disabilities as na€ıve, dependent on others for care, immature, and incompetent.39,40 Some of these images seem to derive from the biomedical model, and promote a stigma.41,42 According to a variety of the data that we covered, KW strongly embraces biomedical terminology. For example, its website it states that it ‘‘emphasizes the children’s healthy side,’’ implying that disability e or rather, impairments e are the opposite of health. Similarly, a mixture of various terminologies is evident throughout the materials which the movement uses. The terms ‘‘special needs,’’ ‘‘disabilities,’’ and ‘‘handicapped’’ e biomedical terminology e are used interchangeably with the most prevalent phrase ‘‘special needs.’’ Moreover, in most of the data which it provides, KW defines itself as ‘‘the only youth movement in Israel for children and young adults with special needs.’’ This implies that it is an organization for children with disabilities only e ipso facto, a segregated entity. While discussing the formal education system, Tomlinson43 has argued that: [t]he rhetoric of special needs, the terminology used as a legitimation for the exclusion of more and more children from the normal education system and for placing them in a type of education which does not allow them to compete for educational credentials, and subjects them to even more social control than in normal schooling, is that of special needs. The use of the term is rapidly becoming tautological rhetoric, and its uses are more ideological than educational (p. 72). Biomedical thinking is also evident in KW’s ‘‘core beliefs.’’ The first principle states that ‘‘the difference between a person with a disability and a non-disabled person is the level of support each one needs.’’ This statement assumes that the disability lies within the person. The second belief argues that ‘‘we all have ‘special needs’ that manifest themselves in different ways.’’ This statement seems to dismiss the unique and distinct experience of living with a disability; it ignores the pain, discomfort, and the various negative social reactions that people with disabilities encounter unlike non-disabled individuals.19 In addition, it implies that the disability (or rather impairment) is a metaphor for individual caprices, difficulties, or character faults e that is, it is an inherent negative trait.44

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While Adi Altschuler, Kfir and other individuals with disabilities and their families established KW, today, hierarchies of power e evident in all structural aspects of the movement e perpetuate the inferiority of children with disabilities compared to able-bodied members. We found that a group of non-disabled youth heads each branch e usually veterans of the organization who receive training. Furthermore, the group is both guided and supervised by professional staff members, a social worker, and various students of the caring professions. In other words e disappointingly e able-bodied individuals as well people from para-medical professions fill the key positions. Data revealed that KW membership comprises two groups. The first e ‘‘trainees,’’ or simply ‘‘participants’’ e are approximately 1200 children and youth, (ages seven to twenty-one), with ‘‘complex special needs.’’ The second group comprises over 3000 non-disabled volunteers between the ages of fourteen and eighteen, who study in the mainstream education system. These members are ‘‘tutors,’’ ‘‘instructors,’’ or ‘‘youth counselors.’’ Youth counselors, who design all the activities, receive special training to ‘‘accompany’’ the trainees. In many of the materials, youth counselors describe the relationship with their trainees as beneficial merely to the trainee. In other words, they view the exchange as a nonreciprocal relationship that is based on their giving help and the trainee receiving it. For example, one youth counselor wrote in her detailed feedback that: I’m very content with my relationship with my trainee. I get to know her better at every meeting and I am able to make her happier; therefore, she enjoys the meetings more. I help her return home with a smile on her face. Similarly, another counselor wrote: I’m content when I sense that he reveals things to me; I’m content when he tells me about himself; I’m content that I’m able to make him laugh; I’m content when I know that he had a good time today. At times, in their written accounts youth counselors speak of ‘‘progress,’’ ‘‘development,’’ and ‘‘improvement.’’ These terms reflect the notion that children with disabilities are objects of change. For instance, one counselor says: ‘‘The progress he makes at each meeting, he participates more, he wants to get to know other children .’’ Another says: ‘‘I feel that from meeting to meeting, she shows more willingness to cooperate and makes progress.’’ Another example: I’m content that she comes to every meeting and makes progress and in spite of her limitations, she shows how much she enjoys herself and would not give up. Because of that I see amazing improvements in her. Since 2010, KW has been conducting annual surveys of its youth counselors. In all the past surveys, a number of

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questions referred to the trainee. By constructing them this way, KW has been asking its youth counselors to serve as proxy measurers and estimate, for example, the trainees’ level of enjoyment from various activities, and level of progress. Again, these questions reflect a biomedical perception of children with disabilities, that the KW trainees are part of a rehabilitative program, rather than participating in a leisure activity. The unbalanced ratio of trainees to youth counselors, their age differences, and the various labels assigned to each group are clear manifestations of special services rather than inclusive ones. It is important to realize that labeling is a political act: it entails a moral judgment, reflecting socio-cultural values.45,46 KW does not simply place the children and youth (nondisabled and disabled) in different groups. It also labels them e and these labels that are, in fact, biomedical definitions. This is an integral part of the stigma process,51 creating a culture of an ‘‘us’’ versus ‘‘them.’’ In this studied case, it reinforces both the hegemony of ableism and biomedical definitions of disability. The term ‘‘trainee’’ entails a devaluation of its bearer, suggesting that the labeled need to be ‘‘fixed’’ in order to fit into society. In KW, trainees are viewed as having much to learn, and their progress is monitored and evaluated. Additionally, all trainees are treated uniformly, although they might have different levels of competency. ‘‘Youth counselor’’ is a biomedical term, implying that disability lies within the individual who is counseled. It is not surprising, therefore, that many counselors perceive their roles in medical and para-medical terms, primarily, as being responsible for monitoring the progress of their trainees or promoting them in some way. From the perspective of the YM, the youth counselor’s role is also to create social change and combat disablism. In the materials we analyzed, the counselors are presented as ‘‘building leadership skills’’ through their roles in the organization, which train them for these missions. Although this cause aligns with the social model’s understanding of disability, it contrast starkly with the fundamental essence of the social and rights-based model as reflected in the slogan ‘‘Nothing About Us Without Us,’’ which was adopted by the disability rights movement.47 Social model of disability Although KW clearly tends toward using biomedical language, it also utilizes terminology that aligns with the social model and a rights-based approach to disability. Typically, however, it mixes such terminology with biomedical concepts. As mentioned above, the terms ‘‘special needs,’’ ‘‘disabilities,’’ and ‘‘handicapped’’ are used interchangeably. An example of such mixed terminology appears on the movement’s website. It describes its mission as the ‘‘[s] ocial integration of children and youth with special needs

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together with able-bodied youth in social and informal educational activities.’’ This statement, somewhat of an amalgam of biomedical terminology (‘‘special needs’’), integration terminology (‘‘social integration’’) and social model language (‘‘able-bodied’’), implies that KW opposes the segregation principle and, furthermore, attempts to promote social integration. In a discrete document, KW states that it ‘‘puts on the public agenda the issue of special needs children’s rights to social interaction and friends’’ and enables children with disabilities to ‘‘become a part of community life in Israel.’’ This definition implies that the movement strives to achieve the social inclusion of youth and children with disabilities, and not merely integrate them. Elsewhere, KW stresses its engagement in ‘‘changing the root causes of discrimination against children with disabilities by their able-bodied peers and setting the foundation for a future generation who is tolerant and understanding of people with disabilities.’’ Once again, it uses a hybrid of biomedical and rights-based definitions (‘‘social inclusion,’’ ‘‘discrimination’’). Although this amalgam of terminology does not portray a coherent approach to disability, it does attest to some familiarity with the social model of disability. We found very little further evidence supporting the social model. A negligible number of youth counselors describe their personal experience as equal partners participating in the movement’s activities. For example, a youth counselor writes: Shira, the trainee I tutor, is my best friend in the world. She is an amazing girl who has taught me a lot about life, about how I should not give up and about true friendship. Shira and I are part of something much bigger; we are part of friendship and real love. KW is a youth movement that I am proud to be a part of. It’s a place where I feel at home. If a child cannot speak, it does not mean that he or she has nothing to say. That does not mean he or she cannot choose and decide for himself or herself .. it does not mean that he or she is not a human being with wants and rights of his or her own. Children with physical or cognitive disabilities can do many things, make decisions and choose everything in their own unique way. Another counselor writes: ‘‘We are like siblings, and there is almost nothing different between us.’’ Yet another states: ‘‘I’m content that we can just talk about everything like friends do, the relationship between me and my trainee is not a relationship between a person and a mediator, it is a relationship between friends.’’ Although such quotes are rare, they cannot be overlooked. The use of words such as ‘‘friendship,’’ ‘‘friends,’’ ‘‘real love,’’ ‘‘siblings’’ not only depicts the extent and depth of human bonding between the two groups of members, but also reflects their equal standing in the relationship.

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Discussion In this study we set out to explore the ways in which KW assigns meanings to recreation for children and youth with disabilities. Our findings show that it adopts a rather mixed, at times contradictory, understanding of this subject. Most of the YM’s content and structure that we examined reflects biomedical hegemony, and assumes the superiority of ‘‘able-bodied’’ persons. KW perceives youth and children with disabilities as inherently different from non-disabled youth. While the latter are seen as future leaders and extremely competent, the former are perceived as incompetent and passive. The voices of youth with disabilities are not heard; they are not seen as capable of making choices, and do not receive the opportunity to be full, equal members of the movement. Thus e paradoxically e KW contributes to their exclusion by symbolically obliterating them.48 At the same time, however e although to a much lesser degree e it seems that the social model of disability in general, and principles of full inclusion, equality, choice and self-determination, in particular, are embedded in KW’s understanding of recreation. Perhaps these primary manifestations of a more political approach signify a transitional phase between purely biomedical thinking and a more rights-based approach. We note several limitations to our qualitative study. While this method is highly appropriate for a more indepth understanding of a social phenomenon and for exploratory studies, our findings cannot be generalized. Further research is needed in order to address the studied phenomenon in other settings, with larger samples and populations, and through a variety of research methods. Future studies should also attempt to compare the meanings of recreation for children and youth with disabilities in KW (and similar entities), with our findings. Despite these limitations, however, our findings are in accord with other research on disability in Israel: These shows that the biomedical model of disability is still highly prevalent in, for example, the Israeli mass media.49 The hegemony of the biomedical model was also found in policies and legislation, even after the enactment of the Israeli disability antidiscrimination law (Equal Rights for People with Disabilities Law, 5758e1998).50 It is worth noting that the right to culture and leisure for people with disabilities is not realized in legislation, although it was part of the original Equal Rights for People with Disabilities Bill of 1995.51 Our findings show that, although KW is an informal educational organization, it largely maintains and reflects the general social order of the Israeli formal education system. Recent data51 have shown that, in the years 2012e2013, approximately 3.6% (72,276) of all Israeli students studied in the special education system (that is, in special education schools or segregated classes in mainstream schools). Furthermore, data have shown that

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‘‘[t]he number of students in special education has grown faster than the total number of students’’ (Mor 2009, p. 54). Indicators of change in the way in which Israeli society understands disability may account for our somewhat mixed findings. Perhaps the most significant one is the 2012 ratification of the CRPD by Israel. This signifies the realization of the right to full participation in cultural life, recreation, leisure and sport for disabled people. We hope that, in the near future, children and youth with disabilities will be able to exercise their right to participation in youth movements, and become fully included in this significant Israeli cultural field. References 1. Caldwell LL. Leisure and health: why is leisure therapeutic? Brit J Guid Couns. 2005;33(1):7e26. 2. Pagan-Rodrıguez R. How do disabled individuals spend their leisure time? Disabil Health J. 2014;7(2):196e205. 3. Powrie B, Kolehmainen N, Turpin M, Ziviani J, Copley J. The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis. Dev Med Child Neurol. 2015;57(11):993e1010. 4. Lord JE, Stein MA. Social rights and the relational value of the rights to participate in sport, recreation, and play. Boston Univ Int Law J. 2009;27(249):9e25. 5. Connors C, Stalker K. Children’s experiences of disability: pointers to a social model of childhood disability. Disabil Soc. 2007;22(1): 19e33. 6. Jones DB. Denied from a lot of places: barriers to participation in community recreation programs encountered by children with disabilities in Maine: perspectives of parents. Leisure/Loisir. 2003;28(1e2):49e69. 7. King G, McDougall J, DeWit D, Petrenchik T, Hurley P, Law M. Predictors of change over time in the activity participation of children and youth with physical disabilities. Child Health Care. 2009;38(4):321e351. 8. Ullenhag A, Bult MK, Nyquist A, et al. An international comparison of patterns of participation in leisure activities for children with and without disabilities in Sweden, Norway and the Netherlands. Dev Neurorehabil. 2012;15(5):369e385. 9. Shikako-Thomas K, Majnemer A, Law M, Lach L. Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review. Phys Occup Ther Pediatr. 2008;28(2): 155e169. 10. King M, Shields N, Imms C, Black M, Ardern C. Participation of children with Intellectual disability compared with typically developing children. Res Dev Disabil. 2013;34(5):1854e1862. 11. Larson RW, Verma S. How children and adolescents spend time across the world: work, play, and developmental opportunities. Psychol Bull. 1999;125(6):701e736. 12. Cohen EH. Changes among Israeli youth movements: a structural analysis based on Kahane’s code of informality. Camb J Educ. 2015;45(2):223e243; Shapira R, Gal M, Dror Y, et al. Report of the Committee for Examining the Characteristics of Youth Movements as Basis for Allocation of Funds, http://cms.education.gov.il/EducationCMS/Units/Noar/ TechumeiHaminhal/ChinuchChevrathi/TenuothNoar.htm; 2003 [in Hebrew]. 13. Israel Ministry of Education. Society and Youth Administration, http://cms.education.gov.il/EducationCMS/Units/Noar/TechumeiHam inhal/ChinuchChevrathi/TenuothNoar.htm; 2015 [in Hebrew]. 14. Seginer R. Beyond the call of duty: the service of Israeli youth in military and civic contexts. In: Yates M, Youniss J, eds. Roots of

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