The Institutional Conditions of the Life of People with Intellectual Disabilities (ID) in a Residential Care Facility

Jakub Niedbalski

doi:10.18778/1733-8069.18.2.04

Autor

Jakub Niedbalski University of Lodz https://orcid.org/0000-0002-2803-7628

DOI:

https://doi.org/10.18778/1733-8069.18.2.04

Słowa kluczowe:

autonomia, kontrola, dom pomocy społecznej, opieka instytucjonalna, niepełnosprawność intelektualna, relacje interpersonalne

Abstrakt

Celem artykułu jest ukazanie, charakteryzującego się swoistą ambiwalencją, systemu instytucjonalnej opieki nad osobami z niepełnosprawnością intelektualną w Polsce. Cały wywód opiera się na dwóch zasadniczych i dychotomicznych kategoriach: kontroli i podporządkowaniu versus autonomii i niezależności. Każda z tych kategorii jest powiązana z jedną z dwóch głównych perspektyw postrzegania domu pomocy społecznej. Pierwszą, wywodzącą się z goffmanowskiej wizji instytucji totalnej, w której jednostkę przedstawia się jako uprzedmiotowiony obiekt działań innych osób, demaskując sytuację izolowania i zależności osobistej. Drugą reprezentuje model relacji personelu i podopiecznych, charakteryzujący się indywidualistycznym podejściem do potrzeb osoby niepełnosprawnej, z poszanowaniem jej prawa do autonomii i samostanowienia. Konfrontacja tych dwóch perspektyw i obszarów zagadnień jest przedmiotem rozważań w niniejszym artykule.

Biogram autora

Jakub Niedbalski - University of Lodz

Jakub Niedbalski, a sociologist, a staff member employed in the Department of Sociology of Organization and Management of the Institute of Sociology, University of Lodz; committed to both teaching and research. He specializes in the computer-assisted analysis of qualitative data, qualitative research methods, the sociology of disability, and the sociology of sport. He researches the social activation of people with disabilities as well as the situation of families with people with disabilities, including entities and institutions supporting them. He is the author of several dozens of scientific publications devoted to the issues of disability, social assistance, and the qualitative research methodology.

Bibliografia

Arndt, Sandra A., Moira Konrad, and David W. Test. 2006. “Effects of the self-directed IEP on student participation in planning meetings.” Remedial and Special Education 27(4):194-207. doi: https://doi.org/10.1177/2165143414544359 DOI: https://doi.org/10.1177/07419325060270040101

Barnes, Coli and Geof Mercer. 2003. Disability. Cambridge, MA: Polity Press.

Bekkema, Nienke et al. 2015. “‘To move or not to move’: A national survey among professionals on beliefs and considerations about the place of end-of-life care for people with ID.” Journal of Intellectual Disability Research 59(3):226-237. doi: https://doi.org/10.1111/jir.12130 DOI: https://doi.org/10.1111/jir.12130

Björnsdóttir, Kristin, Guorun V. Stefánsdóttir, and Astriour Stefánsdóttir. 2015. “‘It’s my life’: Autonomy and people with ID.” Journal of ID 19(1):5-21. doi: https://doi.org/10.1177/1744629514564691 DOI: https://doi.org/10.1177/1744629514564691

Brown, Fredda et al. 1998. “Selfdetermination for individuals with the most severe disabilities: Moving beyond Chimera1.” The Journal of the Association for Persons with Severe Handicaps 23(1):17-26. doi: https://doi.org/10.2511/rpsd.23.1.17 DOI: https://doi.org/10.2511/rpsd.23.1.17

Carlson, Licia. 2010. The faces of intellectual disability: Philosophical reflections. Bloomington. IN: Indiana University Press.

Charmaz, Kathy. 2006. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage.

Charmaz, Kathy. 2019. “Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives, Practices, and Policies on Living with Chronic Illness and Disability.” Symbolic Interaction 43(1):21-45. doi: https://doi.org/10.1002/symb.432 DOI: https://doi.org/10.1002/symb.432

Chartres, Dianne and John Brayley. 2010. Office of the public advocate South Australia: Submission to the productivity commission inquiry into disability care and support. Collinswood: Office of the Public Advocate.

Crocker, Allen C. 1988. “Medical-care for adults with developmental-disabilities.” Jama-Journal of the American Medical Association 260(10):1455-1455. doi: https://doi.org/10.3389/fpubh.2014.00083 DOI: https://doi.org/10.1001/jama.260.10.1455

DuBois, Brenda and Karla K. Miley. 2011. “Social Work: An Empowering Profession. 7th Edition. Boston, MA: Pearson.

Dunn, Michael C., Isabel C. Clare, and Anthony J. Holland. 2008. “Substitute decision-making for adults with ID living in residential care: Learning through experience.” Health Care Analysis 16(1):52-64. doi: https://doi.org/10.1007/s10728-007-0053-9 DOI: https://doi.org/10.1007/s10728-007-0053-9

Dunn, Michael C., Isabel C. Clare, and Anthony J. Holland. 2010. “Living ‘a life like ours’: Support workers accounts of substitute decision-making in residential care homes for adults with intellectual disabilities.” Journal of Intellectual Disability Research 54(2):144-160. doi: https://doi.org/10.1111/j.1365-2788.2009.01228.x DOI: https://doi.org/10.1111/j.1365-2788.2009.01228.x

Geniene, Rasa and Egle Sumskiene. 2016. “Reform of the residential care in Lithuania from the perspective of institutional theory.” Socialine Teorija Empirija Politikair Praktika 12:74-89. doi: https://doi.org/10.15388/STEPP.2016.12.9818 DOI: https://doi.org/10.15388/STEPP.2016.12.9818

Glaser, Barney. 1978. Theoretical Sensitivity. San Francisco: Sociology Press.

Glaser, Barney and Anselm L. Strauss. 1967. The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.

Goffman, Erving. 1961. Asylums: Essays on Social Situation of Mental Patients and Other Inmates. Garden City: Doubleday Anchor Book.

Goffman, Erving. 1967. Interaction Ritual: Essays on Face-to-Face Behavior. New York: Doubleday Anchor.

Goffman, Erving. 1979. Gender Advertisements. New York: Harper and Row.

Gonzalez-Rodriguez, Ruben and Maria C. Fernandez. 2017. “Attention to disability in residential care facilities.” Cuadernos de Trabajo Social 30(2):403-415. doi: https://doi.org/10.5093/pi2018a4 DOI: https://doi.org/10.5209/CUTS.52098

Goodley, Dan. 2000. Self-advocacy in the lives of people with intellectual disabilities: The politics of resilience. Buckingham: Open University Press.

Granosik, Mariusz. 2006. Profesjonalny wymiar pracy socjalnej. Katowice: Wydawnictwo Naukowe “Śląsk.”

Harris, Nicola, Antonia Beringer, and Margaret Fletcher. 2016. “Families’ priorities in life-limiting illness: Improving quality with online empowerment.” Archives of Disease in Childhood 101(3):247-252. DOI: https://doi.org/10.1136/archdischild-2015-308769

Hawkins, Rebecca, Michael Redley, and Anthony J. Holland. 2011. “Duty of care and autonomy: How support workers managed the tension between protecting service users from risk and promoting their independence in a specialist group home.” Journal of Intellectual Disability Research 55(9):873-884. doi: https://doi.org/10.1111/j.1365-2788.2011.01445.x DOI: https://doi.org/10.1111/j.1365-2788.2011.01445.x

Hoole, Lucy and Sally Morgan. 2011. “‘It’s only right that we get involved’: Service-user perspectives on involvement in learning disability services.” British Journal of Learning Disabilities 39(1):5-10. doi: https://doi.org/10.1111/j.1468-3156.2009.00563.x DOI: https://doi.org/10.1111/j.1468-3156.2009.00563.x

Kelly, Fionnola et al. 2019. “A case-study of policy change in residential service provision for adult people with intellectual disability in Ireland.” Health and Social Care in the Community 27(5):E760-E768. doi: https://doi.org/10.1111/hsc.12803. DOI: https://doi.org/10.1111/hsc.12803

Klepikova, Anna. 2019. “Residential care institutions for people with disabilities in Russia: questioning totality.” Journal of Social Policy Studies 17(3):453-464. doi: https://doi.org/10.17323/727-0634-2019-17-3-453-464 DOI: https://doi.org/10.17323/727-0634-2019-17-3-453-464

Lennox, Nicholas G., Justine N. Diggins, and Antoni M. Ugoni. 1997. “The general practice care of people with intellectual disability: Barriers and solutions.” Journal of Intellectual Disability Research 41:380-390. doi: https://doi.org/10.1111/j.1365-2788.1997.tb00725.x DOI: https://doi.org/10.1111/j.1365-2788.1997.tb00725.x

Lincoln, Yvonna S. and Egon G. Guba. 1985. Naturalistic Inquiry. Beverly Hills, CA: Sage. DOI: https://doi.org/10.1016/0147-1767(85)90062-8

Lonkila, Markku. 1995. “Grounded theory as an emerging paradigm for computer-assisted qualitative data analysis.” Pp. 41-51 in Computer-Aided Qualitative Data Analysis, edited by U. Kelle. London: Sage.

Mahone, Irma H. et al. 2011. “Shared decision-making in mental health treatment: Qualitative findings from stakeholder focus groups.” Archives of Psychiatric Nursing 25(6):27-36. doi: https://doi/org/10.1016/j.apnu.2011.04.003 DOI: https://doi.org/10.1016/j.apnu.2011.04.003

Marsland, Dave, Peter Oakes, and Caroline White. 2015. “Abuse in care? A research project to identify early indicators of concern in residential and nursing homes for older people.” Journal of Adult Protection 17(2):111-125. doi: https://doi.org/10.1108/JAP-08-2014-0027 DOI: https://doi.org/10.1108/JAP-08-2014-0027

Meininger, Herman P. 2001. “Autonomy and professional responsibility in care for persons with ID.” Nursing Philosophy 2(3):240-250. doi: https://doi.org/10.1046/j.1466-769X.2000.00065.x DOI: https://doi.org/10.1046/j.1466-769X.2000.00065.x

Olney, Marjorie F. 2001. “Communication strategies of adults with severe disabilities.” Rehabilitation Counseling Bulletin 44(2):87-94. doi: https://doi.org/10.1177/003435520104400205 DOI: https://doi.org/10.1177/003435520104400205

Patton, Michael Q. 2001. Qualitative evaluation and research methods. Thousand Oaks, CA: Sage.

Richards, Lyn. 2005. Using NVivo in Qualitative Research. London, Los Angeles: Sage.

Saunders, Benjamin, Jenny Kitzinger, and Celia Kitzinger. 2014. “Anonymising interview data: Challenges and compromise in practice.” Qualitative Research 15(5):616-632. DOI: https://doi.org/10.1177/1468794114550439

Saunders, Benjamin, Jenny Kitzinger, and Celia Kitzinger. 2015. “Participant anonymity in the internet age: From theory to practice.” Qualitative Research in Psychology 12(2):125-137. DOI: https://doi.org/10.1080/14780887.2014.948697

Shakespeare, Tom. 1996. “Disability, Identity and Difference.” Pp. 94-113 in Exploring the Divide Leeds, edited by C. Barnes and G. Mercer. Leeds: Disability Press.

Strauss, Anselm L. and Juliet Corbin. 1990. Basics of Qualitative Research. London: Sage.

Sumskiene, Egle and Urte L. Orlova. 2015. “Sexuality of ‘Dehumanized People’ across Post-Soviet Countries: Patterns from Closed Residential Care Institutions in Lithuania.” Sexuality and Culture 19(2):369-387. doi: https://doi.org/10.1177/0081246316678154 DOI: https://doi.org/10.1007/s12119-014-9262-1

Trip, Henrietta et al. 2016. “The role of key workers in supporting people with intellectual disability in the self-management of their diabetes: A qualitative New Zealand study.” Health and Social Care in the Community 24(6):789-798. doi: https://doi.org/10.1111/hsc.12262 DOI: https://doi.org/10.1111/hsc.12262

Wahmsley, Jan and Kelly Johnson. 2003. Inclusive research with people with learning disabilities: Past, present and futures. London, New York: Jessica Kingsley Publishers.

Wehmeyer, Michael L, Abery, Brian H., Mithaug Dennis E., Stancliffe, Roger J. 2003. Theory in Self-Determination: Foundations for Educational Practice. Springfield, IL: Charles C Thomas Publisher, LTD.

Wiltshier, Fiona. 2011. “Researching with NVivo.” Forum: Qualitative Social Research 12(1). doi: https://doi.org/10.17169/fqs-12.1.1628