题名

「我們」的選擇、「我們」自己決定:肢體障礙者機構居住與自立生活

并列篇名

Our Choices, Ourselves: Disabled People Living in the Institution and Independent Living

DOI

10.6171/ntuswr.202312_(48).0003

作者

周月清(Yueh-Ching Chou);陳伯偉(Bo-wei Chen);林君潔(Chun-Chieh Lin)

关键词

障礙者 ; 選擇 ; 機構 ; 社區居住 ; 自立生活 ; disabled people ; choice ; institution ; living in the community ; independent living

期刊名称

臺大社會工作學刊

卷期/出版年月

48期(2023 / 12 / 01)

页次

69 - 114

内容语文

繁體中文;英文

中文摘要

本研究回應障礙解放研究典範,從障礙者本人經驗出發,以社會福利權及聯合國身心障礙者權利公約觀點,探討障礙者住「機構」(institution)的經驗。深入訪談13位(曾)住機構肢體障礙者。發現:住機構不是自己的選擇、被安排住進老人長照與啟智機構、受到監視/過一成不變的團體生活、想離開並思考如何離開機構、住機構不是一個選項。政策建議:居住權還給障礙者,邀請障礙者本人參與居住服務規劃,資源支持障礙者社區居住;住機構者可以搬到社區自立生活;立法禁止兒童少年被送進機構。

英文摘要

Emancipatory disability research paradigm and human rights perspective were employed herein; this study aims to explore disabled people's living experiences in/out of institutions and whether living in an institution is a choice made by disabled people. Regarding the experiences of living in an institution, four main themes emerged: living in an institution is not my choice, living in a nursing home or in an institution for people with intellectual disability, daily life being controlled and under surveillance, and longing for leaving and/or planning to move out of the institution. Moving back to the institution is not a desirable option for the participants. In order to support disabled people, budget and home/community-based services (e.g., homecare and personal assistance) should be extended to meet the needs of disabled people and be endorsed by the laws. The budget could be transferred for those disabled people who move from the institution to live in the community. Living in the community for children and adolescents younger than 20 year-old should be endorsed by the laws.

主题分类 社會科學 > 社會學
参考文献
  1. 周月清, Y.-C.(2005)。台灣智障者居住服務探討─型態、規模、對象與變遷。臺灣社會工作學刊,4,34-75。
    連結:
  2. 周月清, Y.-C.(2005)。發展智能障礙者社區居住與生活:美英兩國探討比較。社會政策與社會工作學刊,9(2),139-196。
    連結:
  3. 周月清, Y.-C.,李婉萍, W.-P.,張意才, I.-T.(2007)。住民社區居住與生活參與、選擇與自主:以台灣六個團體家庭成年智障者為例。東吳社會工作學報,16,37-78。
    連結:
  4. 周月清, Y.-C.,陳伯偉, B.-W.,張家寧, C.-N.(2019)。「個人助理是居服的補充包」?地方政府執行身心障礙者自立生活支持/個助服務的迷思與困境。臺灣社會福利學刊,15(2),1-56。
    連結:
  5. 身心障礙者權利公約(2022)。〈2022 年 8 月 6 日身心障礙者權利公約第二次國家報告國際審查結論性意見中、英文版之說明(翻譯初稿)〉。【Convention on the Rights of Persons with Disabilities. (2022). Concluding observations of the second report of the Republic of China (Taiwan) on the Convention on the Rights of Persons with Disabilities (CRPD) adopted by the International Review Committee (IRC) on 6 August 2022.】
  6. Albrecht, G. L.(Ed.),Seelman, K. D.(Ed.),Bury, M.(Ed.)(2001).Handbook of disability studies.Sage.
  7. Allardt, E.(1976).Dimensions of welfare in a comparative Scandinavian study.Acta Sociologica,19(3),227-240.
  8. Askheim, O. P.,Bengtsson, H.,Bjelke, B. R.(2014).Personal assistance in a Scandinavian context: Similarities, differences and developmental traits.Scandinavian Journal of Disability Research,16,3-18.
  9. Barnes, C.(2003).What a difference a decade makes: Reflections on doing ‘emancipatory’ disability research.Disability & Society,18(1),3-17.
  10. Barnes, C.(Ed.),Mercer, G.(Ed.)(1997).Doing disability research.The Disability Press.
  11. Barry, S.,Knox, L.,Douglas, J. M.(2018).Time’s Up”: The experience of entering residential aged care for young people with acquired neurological disorders and their families.Brain Impairment,20(1),37-48.
  12. Barton, L.(2005).Emancipatory research and disabled people: Some observations and questions.Educational Review,57(3),317-327.
  13. Berghs, M.,Atkin, K.,Hatton, C.,Thomas, C.(2019).Do disabled people need a stronger social model: A social model of human rights?.Disability & Society,34(7-8),1034-1039.
  14. Braddock, D.,Emerson, E.,Felce, D.,Stancliffe, R. J.(2001).Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia.Mental Retardation and Developmental Disabilities Research Reviews,7(2),115-121.
  15. Braun, V.,Clarke, V.(2006).Using thematic analysis in psychology.Qualitative Research in Psychology,3(2),77-101.
  16. Chou, Y.-C.,Chen, B.-W.,Kröger, T.(2023).Lost in translation: Implementing personal assistance in an East Asian context.Disability & Society,38(4),587-609.
  17. Chou, Y.-C.,Kröger, T.,Lee, Y.-C.(2010).Predictors of job satisfaction among staff in residential settings for persons with intellectual disabilities: A comparison between three residential models.Journal of Applied Research in Intellectual Disabilities,23(3),279-289.
  18. Chou, Y.-C.,Lin, L.-C.,Pu, C.-Y.,Lee, W.-P.,Chang, S.-C.(2008).Outcomes and costs of residential services for adults with intellectual disabilities in Taiwan: A comparative evaluation.Journal of Applied Research in Intellectual Disabilities,21(2),114-125.
  19. Chou, Y.-C.,Schalock, R. L.(2007).Trends in residential policies and services for people with intellectual disabilities in Taiwan.Journal of Intellectual Disability Research,51(2),135-141.
  20. D’Or, M.,Kelly, J.,McCawley, A.-L.(2021).The lived experience of younger people with a disability living in residential aged care facilities in Australia.Disability & Society,36(4),618-635.
  21. Dwyer, A.,Heary, C.,Ward, M.,MacNeela, P.(2019).Adding insult to brain injury: Young adults’ experiences of residing in nursing homes following acquired brain injury.Disability and Rehabilitation,41(1),33-43.
  22. Edwards, R. L.(Ed.)(1995).Encyclopedia of social work.NASW Press.
  23. Emerson, E.,Robertson, J.,Gregory, N.,Kessissoglou, S.,Hatton, C.,Hallam, A.,Knapp, M.,Jarbrink, K.,Netten, A.,Linehan, C.(2000).The quality and costs of community-based residential supports and residential campuses for people with severe and complex disabilities.Journal of Intellectual & Developmental Disability,25(4),263-279.
  24. Felce, D.,Bowley, C.,Baxter, H.,Jones, E.,Lowe, K. M.,Emerson, E.(2000).The effectiveness of staff support: Evaluating active support training using a conditional probability approach.Research in Developmental Disabilities,21(4),243-255.
  25. Fereday, J.,Muir-Cochrane, E.(2006).Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development.International Journal of Qualitative Methods,5(1),180-92.
  26. Fina, V. D.(Ed.),Cera, R.(Ed.),Palmisano, G.(Ed.)(2017).The United Nations Convention on the Rights of Persons with Disabilities.Springer.
  27. Goffman, E.(1961).Asylums.Anchor Books.
  28. Goodwin, S.(1990).Community care and the future of mental health service provision.Avebury.
  29. Grunewald, K.(2003).Close the institutions for the intellectually disabled: Everyone can live in the open society.Stockholm, Sweden:National Board of Health and Welfare.
  30. Harpur, P.(2012).Embracing the new disability rights paradigm: The importance of the Convention on the Rights of Persons with Disabilities.Disability & Society,27(1),1-14.
  31. Heal, L. W.(Ed.),Haney, J. I.(Ed.),Novak Amado, A. R.(Ed.)(1988).Integration of developmentally disabled individuals into the community.Paul H. Brookes.
  32. Johnson, K.(Ed.),Traustadottir, R.(Ed.)(2005).Deinstitutionalization and people with intellectual disabilities: In and out of institutions.Jessica Kingsley Publishers.
  33. Kappel, B.,Nagel, S.,Wieck, C.(1990).Kappel, B., Nagel, S., & Wieck, C. (1990). The heart of community is inclusion. State of Minnesota, State Planning Agency, The Governor’s Planning Council on Developmental Disabilities..
  34. Lakin, K. C.,Stancliffe, R. J.(2007).Residential supports for persons with intellectual and developmental disabilities.Mental Retardation and Developmental Disabilities Research Review,13(2),151-159.
  35. Lamb, H. R.,Bachrach, L. L.(2001).Some perspectives on deinstitutionalization.Psychiatric Services,52(8),1039-1045.
  36. Lawson, A.,Beckett, A. E.(2021).The social and human rights models of disability: Towards a complementarity thesis.The International Journal of Human Rights,25(2),348-379.
  37. Lincoln, Y. S.,Guba, E. G.(1985).Naturalistic inquiry.Sage.
  38. Mansell, J.(Ed.),Ericsson, K.(Ed.)(2013).Deinstitutionalization and community living: Intellectual disability services in Britain, Scandinavia and the USA.Springer-Science+Business Meda, B.V..
  39. Mansell, J.,Knapp, M.,Beadle-Brown, J.,Beecham, J.(2007).Deinstitutionalisation and community living-Outcomes and costs: Report of a European Study.Tizard Centre, University of Kent.
  40. Mishra, R.(1981).Society and social policy: Theories and practice of welfare.Macmillan.
  41. Mishra, R.(2005).Social rights as human rights: Globalizing social protection.International Social Work,48(1),9-20.
  42. Mladenov, T.,Petri, G.(2020).Critique of deinstitutionalisation in postsocialist Central and Eastern Europe.Disability & Society,35(8),1203-1226.
  43. Morris, J.(2001).Impairment and disability: Constructing an ethics of care that promotes human rights.Hypatia,16(4),1-16.
  44. Morris, J.(2004).Independent lives and community care: A disempowering framework.Disability & Society,19(5),427-442.
  45. Morris, J.(1992).Personal and political: A feminist perspective on researching physical disability.Disability, Handicap & Society,7(2),157-166.
  46. Murphy, K.,Bantry-White, E.(2021).Behind closed doors: Human rights in residential care for people with an intellectual disability in Ireland.Disability & Society,36(5),750-771.
  47. Novick, G.(2008).Is there a bias against telephone interviews in qualitative research?.Research in Nursing & Health,31(4),391-398.
  48. Nussbaum, M.(Ed.),Sen, A.(Ed.)(1993).The quality of life.Oxford Scholoarship Online.
  49. Office of High Commissioner for Human Rights [OHCHR], United Nations Human Rights. (2010). Monitoring the convention on the rights of persons with disabilities: Guidance for human rights monitors. Professional training series No. 17. New York and Geneva, 2010. http://www.ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf
  50. Oliver, S.,Gosden-Kaye, E. Z.,Jarman, H.,Winkler, D.,Douglas, J. M.(2020).A scoping review to explore the experiences and outcomes of younger people with disabilities in residential aged care facilities.Brain Injury,34(11),1446-1460.
  51. Ratzka, A. (2003). What is independent living? https://www.independentliving.org/def.html
  52. Rubin, A.,Babbie, E. R.(2008).Research methods for social work.Brooks/Cole.
  53. Rummery, K.,Glendinning. C.(2000).Access to services as a civil and social rights issue: The role of welfare professionals in regulating access to and commissioning services for disabled and older people under new labour.Social Policy & Administration,34(5),529-550.
  54. Sandvin, T. J.,Söder, M.(1996).Welfare states reconstruction: Dedifferentiation and individualism.Intellectual disabilities in the Nordic welfare states: Policies and everyday life
  55. Scott, S.(2010).Revisiting the total institution: Performative regulation in the reinventive institution.Sociology,44(2),213-231.
  56. Shakespeare, T.(1996).Rules of engagement: Doing disability research.Disability & Society,11(1),115-121.
  57. Shaw, K.,Cartwright, C.,Craig, J.(2011).The housing and support needs of people with an intellectual disability into older age.Journal of Intellectual Disability Research,55(9),895-903.
  58. Smith, B.,Caddick, N.(2015).The impact of living in a care home on the health and wellbeing of spinal cord injured people.International Journal Environmental Research and Public Health,12(4),185-202.
  59. Stalker, K.(1998).Some ethical and methodological issues in research with people with learning difficulties.Disability and Society,13(1),5-19.
  60. United Nations. (2018). CRPD/C/GC/7: 4. https://reurl.cc/ZXDjQ3
  61. Walmsley, J.(2001).Normalisation, emancipatory research and inclusive research in learning disability.Disability &Society,16(2),187-205.
  62. Watson, N.(Ed.),Roulstone, A.(Ed.),Thomas, C.(Ed.)(2020).Routledge handbook of disability studies.Routledge.
  63. WHO (2004). ICF introduction. http://www.who.int/classification/icf/intros/ICF-Eng-Intro.pdf
  64. Wiesel, I.,Bigby, C.(2015).Movement on shifting sands: Deinstitutionalisation and people with intellectual disability in Australia, 1974-2014.Urban Policy and Research,33(2),178-194.
  65. Williams, L.,Nind, M.(1999).Insiders or outsiders: Normalisation and women with learning difficulties.Disability & Society,14(5),659-672.
  66. Winkler, D.,Farnworth, L.,Sloan, S.(2006).People under 60 Living in Aged Care Facilities in Victoria.Australian Health Review,30(1),100-108.
  67. Winkler, D.,Sloan, S.,Callaway, L.(2010).People Under 50 With Acquired Brain Injury Living in Residential Aged Care.Brain Impairment,11(3),299-312.
  68. Young, L.,Ashman, A.,Sigafoos, J.,Grevell, P.(2001).Closure of the Challinor Center II: An extended report on 95 individuals after 12 months of community living.Journal of Intellectual & Developmental Disabilities,26(1),51-66.
  69. Zarb, G.(1992).On the road to damascus: First steps towards changing the relations of disability research production.Disability, Handicap, &Society,7(2),125-138.
  70. 中華民國殘障聯盟, R.O.C.(2000).邁向二十一世紀身心障礙福利政策發展藍圖.殘盟=The League for Persons with Disabilities, R.O.C..
  71. 王育瑜, Y.-Y.(2012)。障礙者生活的想像:照顧與社區生活理念及政策探討。聯合勸募論壇,1,1-24。
  72. 李欽湧, Q.-Y.(1994).社會政策分析.巨流=Chuliu.
  73. 周月清(編), Y.-C.,張家寧(編), C.-N.,陳毅(編), Y.,呂又慧(編), Y.-H.(2019).我要我的自立生活.松慧文化=Song-Hui.
  74. 周月清, Y.-C.(2000).障礙福利與社會工作.五南=Wu-Nan.
  75. 周月清, Y.-C.(2005)。北歐智障者搬出「教養院」到社區居住與生活改革進程。臺灣社會福利學刊,4(1),131-167。
  76. 周月清, Y.-C.(2017)。從聯合國身心障礙者權利公約(CRPD)檢視我國身心障礙者自立生活與社區融入。社區發展季刊,158,187-207。
  77. 林萬億, W.-I.(2002)。林萬億(2002 年 3 月 5 日)。〈社會福利政策之回顧與展望(書面發表)〉。「全國社會福利會議分區座談會」,新北市。【Lin, W.-I. (2002, March 5). Social welfare policy: Past and future (Paper presented).Forum of National Social Welfare. New Taipei, Taiwan.】。
  78. 洪玉昭, Y.-C.(2012)。中國文化大學=Chinese Culture University。
  79. 張恒豪, H.-H.,顏詩耕, S.-K(2011)。從慈善邁向權利:臺灣身心障礙福利的發展與挑戰。社區發展季刊,133,402-416。
  80. 陳新霖, S.-L.(1994)。中國文化大學=Chinese Culture University。
  81. 曾玉燕, Y.-Y.(2018)。東海大學=Tunghai University。
  82. 曾國華(2020)。〈尋找人子枕頭的地方/去機構化?家庭的苦誰能分擔?〉。中央廣播電臺。https://www.rti.org.tw/news/view/id/2086216 【Zeng, G.-H. (2020). Looking for the place where my children could be settled down/deinstitutionalization? Who could share the family’s suffering? Radio Taiwan International. https://www.rti.org.tw/news/view/id/2086216】
  83. 潘淑滿, S.-M.(2003).質性研究:理論與運用.心理=Psychological.
  84. 衛生福利部(2021)。〈全日型、夜間型、社區居住及自立生活支持服務使用人數及經費表〉。https://dep.mohw.gov.tw/dos/cp-5337-62357-113.html 【Ministry of Health and Welfare. (2021). Number of users and budget: Institutional care, small scale residential scheme and independent living services.】
  85. 衛生福利部(2023)。〈中華民國 110 年身心障礙者生活狀況及需求調查報告〉。https://dep.mohw.gov.tw/DOS/lp-5096-113.html 【Ministry of Health and Welfare. (2023). Report of disabled people’s living condition and demand survey.】
被引用次数
  1. (2024)。新冠肺炎(COVID-19)防疫第三級警戒對障礙者的影響:防疫困境、焦慮與心理福祉。臺灣社會工作學刊,27,1+3-60。