1,265
Views
12
CrossRef citations to date
0
Altmetric
Articles

Negotiating independence, choice and autonomy: experiences of parents who coordinate personal assistance on behalf of their adult son or daughter

, , &
Pages 604-621 | Received 16 Jul 2015, Accepted 09 May 2016, Published online: 14 Jun 2016

References

  • Ahlström, G., and B. Wadensten. 2011. “Family Member’s Experiences of Personal Assistance given to a Relative.” Health and Social Care in the Community 19 (6): 645–652. 10.1111/hsc.2011.19.issue-6
  • Anderberg, P. 2009. “ANED Country Report on the Implementation of Policies Supporting Independent Living for Disabled People.” In Academic Network of European Disability Experts. Sweden. Accessed December 3, 2012. http://www.disability-europe.net/countries/sweden
  • Askheim, O. P. 2003. “Personal Assistance for People with Intellectual Impairments: Experiences and Dilemmas.” Disability and Society 18 (3): 325–339. 10.1080/0968759032000052897
  • Askheim, O. P. 2005. “Personal Assistance – Direct Payments or Alternative Public Service. Does It Matter for the Promotion of User Control?” Disability and Society 20 (3): 247–260. 10.1080/09687590500060562
  • Askheim, O. P., J. Andersen, I. Guldvik, and V. Johansen. 2013. “Personal Assistance: What Happens to the Arrangement When the Number of Users Increases and New User Groups Are Included.” Disability and Society 28 (3): 353–366 10.1080/09687599.2012.710013
  • Askheim, O. P., H. Bengtsson, and B. R. Bjelke. 2014. “Personal Assistance in a Scandinavian Context: Similarities, Differences and Developmental Traits.” Scandinavian Journal of Disability Research 16 (1): 3–18. 10.1080/15017419.2014.895413
  • Avery, D. 1999. “Talking ‘Tragedy:’ Identity Issues in the Parental Story of Disability.” In Disability Discourse, edited by M. Corker, and S. French, 116–126. Buckingham: Open University Press.
  • Berg, S. 2005. “Personal Assistance Reforms in Sweden: Breaking the Assumption of Dependency.” In The Social Model of Disability: Europe and Majority World, edited by C. Barnes and G. Mercer, 32–48. Leeds: The Disability Press.
  • Bjarnason, D. S. 2002. “New Voices in Iceland. Parents and Adult Children: Juggling Supports and Choices in Time and Space.” Disability and Society 17 (3): 307–326. 10.1080/09687590220139874
  • Bogdan, R. C., and S. K. Biklen. 2007. Qualitative Research for Education. an Introduction to Theories and Methods. New York: Pearson.
  • Brennan, C. Forthcoming. “Article 19 and the Nordic Experience of Independent Living and Personal Assistance “ In Routledge Handbook of Disability Law and Human Rights, edited by P. Blanck and E. Flynn. Abingdon: Routledge.
  • Brennan, C., R. Traustadóttir, P. Anderberg, and J. Rice. 2016. “Are Cutbacks to Personal Assistance Violating Sweden’s Obligations under the UN Convention on the Rights of Persons with Disabilities?” Laws 5 (23): doi:10.3390/laws5020023.
  • Brisenden, S. 1986. “Independent Living and the Medical Model of Disability.” Disability, Handicap and Society 1 (2): 173–178. 10.1080/02674648666780171
  • Caldwell, J. 2007. “Experiences of Families with Relatives with Intellectual and Developmental Disabilities in a Consumer-Directed Support Program.” Disability and Society 22 (6): 549–562. 10.1080/09687590701560139
  • Charmaz, K. 2006. Constructing Grounded Theory. London: Sage.
  • Christensen, K. 2009. “In(Ter)Dependent Lives.” Scandinavian Journal of Disability Research 11 (2): 117–130. 10.1080/15017410902830553
  • Committee on the Rights of Persons with Disabilities. (2014). General Comment No1 (2014) Article 12: Equal Recognition before the Law. Accessed June 3, 2014. http://www.ohchr.org/EN/HRBodies/CRPD/Pages/GC.aspx
  • Creswell, J. W. 2007. Qualitative Inquiry and Research Design. Choosing among Five Approaches. 2nd ed. London: Thousand Oaks, Sage.
  • Dejong, G. 1983. Defining and Implementing the Independent Living Concept. Developing, Implementing, and Evaluating Self-Help Rehabilitation Programs. In Independent Living for Physically Disabled People, edited by N. Crewe, and I. Zola, 4–27. California: People with Disabilities Press.
  • Egilson, S. T., and R. Traustadóttir. 2015. “Families of Disabled Children: Everyday Life in a Social Context (Familie med funksjonshemmede barn: Dagligliv in en social kontekst).” In Intellectual Disability: Everyday Life, Conditions Og Life and Politics (Utviklingshemming: Hverdagsliv, levekår og politick), edited by P. Kermit, A. Gustavsson, A. Kittelsaa, and B. Ytterhus, 91–104. Oslo: Universitetsforlaget.
  • ENIL. 2014. Independent Living Definitions. Accessed January 4, 2015. http://www.enil.eu/il-definitions/
  • European Union Agency for Fundamental Rights. 2012. “Choice and Control: The Right to Independent Living.” Accessed January 12. http://fra.europa.eu/en/publication/2012/choice-and-control-right-independent-living
  • Fineman, M. 2000. “Cracking the Foundational Myths. Independence, Autonomy and Self-Sufficiency.” Journal of Gender, Social Policy and the Law 8 (13): 13–29.
  • Fineman, M. A. 2010. “The Vulnerable Subject and the Responsive State.” In Public Law & Legal Theory Research Paper Series Research Paper No. 10-130, 251–275. Atlanta, GA: Emory University School of Law.
  • Fineman, M. 2012. ‘Elderly’ as Vulnerable. Rethinking the Nature of Individual and Societal Responsibility. Research Paper no. 12–224. Emory: Emory University School of Law.
  • Gibson, B., D. Brooks, D. DeMatteo, and A. King. 2009. “Consumer-Directed Personal Assistance and ‘Care’: Perspectives of Workers and Ventilator-Users.” Disability and Society 24 (3): 317–330. 10.1080/09687590902789487
  • Glasby, J., and R. Littlechild. 2010. Social Work and Direct Payments. Bristol: The Policy Press.
  • Gupta, N. D., N. Smith, and M. Verner. 2008. “The Impact of Nordic Countries’ Family Friendly Policies on Employment, Wages, and Children.” Review of Economics of the Household 6: 65–89. 10.1007/s11150-007-9023-0
  • JAG. 2011. Equality, Assistance and Inclusion. Accessed May 12, 2014. http://www.jag.se/sites/default/files/EngA3fargskrivare.pdf
  • Kamundia, E. 2013. “Choice, Support and Inclusion: Implementing Article 19 of the CRPD in Kenya.” African Disability Rights Yearbook 1: 49–72.
  • Kanter, A. 2011. “The Law: What’s Disability Studies Got to Do with It or an Introduction to Disability Legal Studies.” Columbia Human Rights Law Review 42 (2): 403–479.
  • Kelly, C. 2011. “Making ‘Care’ Accessible: Personal Assistance for Disabled People and the Politics of Language.” Critical Social Policy 31 (4): 562–582. 10.1177/0261018311410529
  • Kittay, E. F. 2011. “The Ethics of Care, Dependency and Disability.” Ratio Juris 24 (1): 307–326.
  • Knight. 2013. “The Changing Face of the ‘Good Mother’: Trends in Research into Families with a Child with Intellectual Disabilities and Some Concerns.” Disability and Society 28 (5): 660–673.
  • Litvak, S., H. Zukas, and J. Heumann 1987. “Attending to America: Personal Assistance for Independent Living a Survey of Attendant Service Programs in the United States for People of All Ages with Disabilities.” The World Institute of Disability. Accessed May 2, 2015. http://files.eric.ed.gov/fulltext/ED297507.pdf
  • Mladenov, T. 2012. “Personal Assistance for Disabled People and the Understanding of Human Being.” Critical Social Policy 32 (2): 242–261. 10.1177/0261018311430454
  • Morris, J. 1993. Independent Lives: Community Care and Disabled People. Basinstoke: Macmillan Press. 10.1007/978-1-349-23136-2
  • Morris, J. 1994. “Community Care or Independent Living?” Critical Social Policy 14 (24): 427–442.
  • Morris, J. 2004. “Independent Living and Community Care: A Disempowering Framework.” Disability and Society 19 (5): 427–442. 10.1080/0968759042000235280
  • Morris, J. 2007. “Care or Empowerment? A Rights Perspective.” Social Policy and Public Administration 31 (1): 54–60.
  • National Board of Health and Welfare (Socialstyrelsen). 2014. Personal Assistant and Goodman. Are the Roles Compatible? Personlig Assistent Och God Man Är Rollerna Förenliga?. Stockholm: National Board of Health and Welfare (Socialstyrelsen).
  • Oka, J. 1988. “Self-Reliance in Interdependent Communities: Independent Living of Disabled Persons in the Asia-Pacific Region.” Accessed October 15, 2014. http://www.independentliving.org/docs4/oka.html
  • Oliver, M. 1986. “Disability and Dependency. a Creation of Industrial Societies?.” In Disability and Dependency, edited by L. Barton, 7–22. Sussex: The Falmer Press.
  • Prior, L. 2003. Using Documents in Social Research. London: Sage.
  • Quinn, G., and S. Doyle. 2012. Getting a Life. Living Independently and Being Included in the Community. Legal Analysis of the Current Use of Structural Funds to Contribute to the Achievement of Article 19 of the UN Convention on the Rights of Persons with Disabilities. Brussels: Office of the United Nations Commissioner for Human Rights Regional Office for Europe. Accessed December 12, 2015. http://goo.gl/mdsDMM
  • Ratzka, A. 1996. “Introduction to Direct Payments for Personal Assistance.” Independent Living Institute. Accessed May 3, 2013. http://www.independentliving.org/docs4/directpay.html
  • Reindal, S. M. 1991. “Independence, Dependence, Interdependence: Some Reflections on the Subject and Personal Autonomy.” Disability and Society 14 (3): 353–367.
  • Ryan, S., and K. Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability and Society 23 (3): 199–210. 10.1080/09687590801953937
  • Scott, A., and C. Doughty. 2012. “Care, Empowerment and Self-Determination in the Practice of Peer Support.” Disability and Society 27 (7): 1011–1024. 10.1080/09687599.2012.695578
  • Shakespeare, T. 2000. Disability Rights and Wrongs. Oxon: Routhledge.
  • Shakespeare, T. 2006. Disability Rights and Wrongs Revisited. Oxon: Routledge.
  • Shaver, S. 2013. “Gender Issues in Welfare States.” In The Routledge Handbook of the Welfare State, edited by B. Greve, 94–104. London: Routledge.
  • Skär, L., and Maare Tam. 2001. “My Assistant and I: Disabled Children’s and Adolescents’ Roles and Relationships to Their Assistants.” Disability and Society 19 (7): 917–931. 10.1080/09687590120084010
  • Stein, M., and J. Lord. 2010. “Monitoring the Convention on the Rights of Persons with Disabilities: Innovations, Lost Opportunities, and Future Potential.” Human Rights Quarterly 32: 689–728. 10.1353/hrq.2010.0003
  • Tøssebro, J., and C. Wendelborg. 2014. Opvekst Med Funksjonshemning: Familie, Livsløb Og Overganger (Growing up with disability: Families, lifecorse and transitions). Oslo: Gyldendal Academisk.
  • Traustadóttir, R. 1991. “Disability Reform and the Role of Women: Community Inclusion and Caring Work.” PhD theses, Syracuse University.
  • Traustadóttir, R., and S. Taylor. 1998. “Invisible Women Invisible Work: Women’s Caring Work in Developmental Disability Services.” In Introduction to Qualitative Research Methods: A Guidebook and Resource, edited by S. Taylor and R. Bogdan, 205–220. 3rd revised ed. New York: John Wiley & Sons.
  • Traustadóttir, R. 2009. Disability Studies, the Social Model and Legal Developments. In The UN Convention on the Rights of Persons with Disabilities. European and Scandinavian Perspectives, edited by O. M. Arnardóttir, and G. Quinn, 3–16. Leiden: Martinus Nijhoff.
  • UN Office of the High Commissioner for Human Rights. 2014. “Thematic Study on the right of Persons with Disabilities to Live Independently and Be Included in the Community.” Accessed May 3, 2015. http://www.ohchr.org/EN/Issues/Disability/Pages/LiveIndependently.aspx
  • Ungerson, C. 1999. “Personal Assistants and Disabled People: An Examination of a Hybrid Form of Work and Care.” Work, Employment and Society 13 (4): 583–600. 10.1177/09500179922118132
  • United Nations. 2006. “Convention on the Rights of Perons with Disabilities.” Accessed January 11, 2013. http://www.un.org/disabilities/convention/conventionfull.shtml
  • Waddington, L. 2007. “A New Era in Human Rights Protection in the European Community: The Implications the United Nations’ Convention on the Rights of Persons with Disabilities for the European Community.” Maastricht Faculty of Law Working Paper No. 2007-4. Accessed January 12, 2015. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1026581
  • Wehmeyer, M. L. 1998. “Self-Determination and Individuals with Significant Disabilities.” Research and Practice for Persons with Severe Disabilities 23 (1): 5–16. 10.2511/rpsd.23.1.5
  • White, G. W., J. Simpson, L. Gonda, C. Ravesloot, and J. Coble. 2010. “Moving from Independence to Interdependence: A Conceptual Model for Better Understanding Community Participation of Centres for Independent Living Consumers.” Journal of Disability Policy Studies 20 (4): 233–240.
  • Williams, V., K. Simons, S. Gramlich, G. McBride, N. Snelham, and B. Myers. 2003. “Paying the Piper and Calling the Tune? The Relationship between Parents and Direct Payments for People with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 16: 219–228. 10.1046/j.1468-3148.2003.00164.x
  • Yamaki, C., and Y. Yamazaki. 2004. “‘Instruments’, ‘Employees’, ‘Companions’, ‘Social Assets’: Understanding Relationships between Persons with Disabilities and Their Assistants in Japan.” Disability and Society 19 (1): 31–46. 10.1080/0968759032000155613

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.