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Understanding Aging and Disability Perspectives on Home Care: Uncovering Facts and Values in Public-Policy Narratives and Discourse*

Published online by Cambridge University Press:  31 March 2010

Phillip G. Clark
Phillip G. Clark*
Affiliation:
University of Rhode Island
*
Requests for offprints should be sent to: / Les demandes de tirés-à-part doivent être adressées à: Phillip G. Clark, Sc.D., Quinn Hall, 55 Lower College Road, University of Rhode Island, Kingston, RI 02881 USA. ([email protected])
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Abstract

Every public-policy problem can be defined in terms of its empirical (“facts”) and normative (“values”) dimensions and the interrelationship between them. An understanding of the connection between facts and values at the foundation of the home care policy debate in the Canadian health-care system is developed through the application of an analytical framework based on the concept of “narrative frame” analysis. The literature on home care policy reports and recommendations is examined within this conceptual structure – including especially publications and reports from the federal government, national organizations, and the aging and disability communities. Finally, observations and conclusions about the significance of home care policy discourse, and of the differences between the aging and disability constituencies in this debate, are offered as a guide for deconstructing the public-policy process.

Résumé

Tous les problèmes ayant trait aux politiques gouvernementales peuvent être délimités par leur dimension empirique (les faits) et leur dimension normative (les valeurs), et par l'interrelation entre ces deux dimensions. Le lien entre les faits et les valeurs sur lesquels repose le débat politique sur les soins à domicile dans le système de santé canadien est examiné par la lorgnette d'un schéma analytique fondé sur la «narration». La documentation formée de rapports et de recommandations sur la politique concernant les soins à domicile est examinée en vertu de cette structure conceptuelle – en particulier, les publications et les rapports du gouvernement fédéral, d'organisations canadiennes et des milieux du vieillissement et de l'incapacité. Enfin, des observations et une conclusion sur la portée du discours politique sur les soins à domicile, et sur les différences entre les sphères du vieillissement et de l'invalidité dans ce débat, sont proposées pour guider le lecteur dans le dédale de l'élaboration des politiques publiques.

Keywords

agingpolicyhome carevaluesethicsnarrativevieillissementpolitiquesoins à domicilevaleurséthiquenarrative
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 26 , Issue S1: Hidden Costs/Invisible Contributions of Caregiving / Coûts cachés et contributions invisibles des soins , Winter/Hiver 2007 , pp. 47 - 62
Copyright
Copyright © Canadian Association on Gerontology 2007

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Footnotes

*

Earlier versions of this paper were presented at a symposium titled “Interdisciplinary Perspectives on the Costs and Contributions of Care” as part of the Hidden Costs/Invisible Contributions (HCIC) Project, Trent University, Peterborough, ON, June 8–10, 2005, and at the 34th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, Halifax, NS, October 20–22, 2005.

The author would like to thank Isabel Sousa of York University and Maggie Quirt of Trent University for their assistance in researching the sources and references used in this paper; and Cameron Crawford of the Roeher Institute, Janis Douglas of the Canadian Association for Community Living, Anne Martin-Matthews of the University of British Columbia, and Louise Plouffe of Health Canada for their help in identifying issues and resources related to this topic and their comments on an earlier draft. This research was funded by grant no. G124130363 to the University of Alberta through the Major Collaborative Research Initiatives (MCRI) program of the Social Sciences and Humanities Research Council of Canada (SSHRC).

References

Ansello, E.F., & Eustis, N.N. (1992). A common stake? Investigating the emerging intersection of aging and disabilities. Generations, 16, 5–8.Google Scholar
Ansello, E.F., & Rose, T. (1989). Aging and lifelong disabilities: Partnership for the twenty-first century. Palm Springs, CA: Elvirita Lewis Foundation.Google Scholar
Baldwin, D.C. (2000). Foreword. Health care teamwork: Interdisciplinary practice and teaching. In Drinka, T.J.K., & Clark, P.G. (Eds.), Westport, CT: Auburn House/Greenwood.Google Scholar
Biggs, S. (2001). Toward critical narrativity: Stories of aging in contemporary social policy. Journal of Aging Studies, 15, 303–316.CrossRefGoogle Scholar
Canadian Association for Community Care (2002a). CACC looks to Romanow report to strengthen home and community care. Press release, November 27, 2002. Toronto: Author. Retrieved 19 January 2004 from http://www.cacc-acssc.com/english/newsroom/20021127.cfm.Google Scholar
Canadian Association for Community Care (2002b). CACC welcomes Romanow report as a good beginning. Press release, November 28, 2002. Toronto: Author. Retrieved 19 January 2004 from http://www.cacc-acssc.com/english/newsroom/20021128.cfm.Google Scholar
Canadian Association for Community Care (2003). CACC gives kudos to first ministers on health accord but details will be critical to success. Press release, February 7, 2003. Toronto: Author. Retrieved 19 January 2004 from http://www.cacc-acssc.com/english/newsroom/20030207.cfm.Google Scholar
Canadian Association for Community Care and Canadian Home Care Association (n.d.). Sustaining Canada's health care system: The role of home and community care. Toronto, ON: Author. Retrieved 19 January 2004 from http://www.cacc-acssc.com/english/pdf/brief.pdf.Google Scholar
Canadian Association on Gerontology. (1999). Editorial: Canadian Association on Gerontology policy statement on home care in Canada. Canadian Journal on Aging, 18(3), i–iii.Google Scholar
Canadian Home Care Association (2002). Romanow recommendations: A foundation for strengthening home care. Press release, November 28, 2002. Ottawa: Author. Retrieved 19 January 2004 from http://www.cdnhomecare.ca/chca_admin/documents/nov_28_02_e_romanow_media_release.pdf.Google Scholar
Canadian Home Care Association. (2003a). Expanding the medicare envelope: Publicly funded home care services. Ottawa: Author. Retrieved 19 January 2004 from http://www.cdnhomecare.ca/chca_admin/documents/expanding_medicare_jan_03.pdf.Google Scholar
Canadian Home Care Association. (2003b). Home care and palliative care: Recommendations to increase awareness, access, and integration. Ottawa: Author Retrieved 19 January 2004 from http://www.cdnhomecare.ca/chca_admin/documents/home_care_and_palliative_care_chca_march_2003_executive_summary.pdf.Google Scholar
Canadian Home Care Association. (2004a). Home care: A national health priority: Visionary leadership can make it happen. Ottawa: Author Retrieved 15 March 2005 from http://www.cdnhomecare.ca/chca_admin/documents/home_care_a_national_health_priority_june_2004.pdf.Google Scholar
Canadian Home Care Association. (2004b). Realizing the potential of home care: A movement from statements to action. Ottawa: Author Retrieved 21 July 2006 from http://www.cdnhomecare.ca/chca_admin/documents/realizing_the_potential_of_home_care_english.pdf.Google Scholar
Carter, M.W. (2002). Advancing an ethical framework for long term care. Journal of Aging Studies, 16, 57–71.Google Scholar
Clark, P.G. (1993a). Moral discourse and public policy in aging: Framing problems, seeking solutions, and “public ethics.”. Canadian Journal on Aging, 12, 485–508.CrossRefGoogle Scholar
Clark, P.G. (1993b). Public policy in the United States and Canada: Individualism, familial obligation, and collective responsibility in the care of the elderly. In Hendricks, J., & Rosenthal, C.J.. (Eds.), The remainder of their days: Domestic policy and older families in the United States and Canada (pp. 13–48). New York: Garland.Google Scholar
Clark, P.G. (1999). Moral economy and the social construction of the “crisis” of aging and health care: Differing Canadian and U.S. perspectives. In Minkler, M., & Estes, C.. (Eds.), Critical gerontology: Perspectives from political and moral economy (pp. 147–167). Amityville, NY: Baywood.Google Scholar
Clark, P.G., Sousa, C.B. (2000). Promoting personal, familial, and organizational change through futures planning. In Janicki, M.P., & Ansello, E.F.. (Eds.), Community supports for aging adults with lifelong disabilities (pp. 121–136). Baltimore, MD: Brookes.Google Scholar
Cohen, E.S. (1988). The elderly mystique: Constraints on the autonomy of the elderly with disabilities. Gerontologist, 28(Suppl.), 24–31.Google Scholar
Collopy, B.J. (1988). Autonomy in long term care: Some crucial distinctions. Gerontologist, 28(Suppl.), 10–17.CrossRefGoogle ScholarPubMed
Collopy, B., Dubler, N., & Zuckerman, C. (1990). The ethics of home care: Autonomy and accommodation. Hastings Center Report, 20(2) (Suppl.), 1–16.CrossRefGoogle ScholarPubMed
Commission on the Future of Health Care in Canada (2002). Building on values: The future of health care in Canada. (Romanow Commission Report). Ottawa: Government of Canada. Retrieved 12 February 2003 from http://www.hc-sc.ca/english/care/romanow/hcc0086.html.Google Scholar
Donoghue, C. (2003). Challenging the authority of the medical definition of disability: An analysis of the resistance to the social constructionist paradigm. Disability & Society, 18, 199–208.Google Scholar
Drewett, A.Y. (1999). Social rights and disability: The language of “rights” in community care policies. Disability & Society, 14, 115–128.Google Scholar
Estes, C.L., & Binney, E.A. (1989). The biomedicalization of aging: Dangers and dilemmas. Gerontologist, 29, 587–597.Google Scholar
Eustis, N.N., Fischer, L.R. (1992). Common needs, different solutions? Younger and older home care clients. In Ansello, E.F., & Eustis, N.N.. (Eds.), Aging and disabilities: Seeking common ground. Amityville, NY: Baywood.Google Scholar
Fast, J.E., & Keating, N.C. (2000). Family caregiving and consequences for carers: Toward a policy research agenda. CPRN discussion paper F/10. Ottawa: Canadian Policy Research Networks Retrieved 12 January 2005 from http://www.cprn.org/en/doc.cfm?doc=432.Google Scholar
Fooks, C., & Lewis, S. (2002). Romanow and beyond: A primer on health reform issues in Canada. Ottawa: Canadian Policy Research Networks Retrieved 12 January 2005 from http://www.cprn.org/en/doc.cfm?doc=428.Google Scholar
Giacomini, M., Hurley, J., Gold, I., Smith, P., & Abelson, J. (2001). “Values” in Canadian health policy analysis: What are we talking about?. Ottawa: Canadian Health Services Research Foundation Retrieved 12 January 2005 from http://www.chsrf.ca/final_research/ogc/pdf/giacomini_e.pdf.Google Scholar
Giacomini, M., Hurley, J., Gold, I., Smith, P., & Abelson, J. (2004). The policy analysis of “values talk”: Lessons from Canadian health reform. Health Policy, 67, 15–24.Google Scholar
Goodley, D. (2001). “Learning difficulties,” the social model of disability, and impairment: Challenging epistemologies. Disability & Society, 16, 207–231.CrossRefGoogle Scholar
Greiner, A.M. (2003). Unhinging the assumptions within independence: Toward a broader conceptualization of diversity and difference in home care. Canadian Review of Social Policy, 51, 29–47.Google Scholar
Health Canada (1998). Proceedings of the National Conference on Home Care. Ottawa: Author. Retrieved 9 August 2004 from http://www.hc-sc.gc.ca/hcs-sss/finance/htf-fass/reference/conf/home-domicile2_e.html.Google Scholar
Health Canada. (1999a). Home care in Canada 1999: An overview. Ottawa: Author Retrieved 19 April 2004 from http://www.hc-sc.gc.ca/hcs-sss/pubs/care-soins/1999-home-domicile/index_e.html.Google Scholar
Health Canada. (1999b). Report on the National Roundtable on Home and Community Care. Ottawa: Author Retrieved 9 August 2004 from http://www.hc-sc.go.ca/homecare/english/rt1.html.Google Scholar
Health Canada. (2003). 2003 first ministers' accord on health care renewal. Ottawa: Author Retrieved 19 April 2005 from http://hc-sc.gc.ca/hcs-sss/delivery-prestation/fptcollab/2003accord/index_e.html.Google Scholar
Health Canada. (2004). First ministers' meeting on the future of health care 2004: A 10-year plan to strengthen health care. Ottawa: Author Retrieved 19 April 2005 from http://www.hc-sc.gc.ca/hcs-sss/delivery-prestation/fptcollab/2004-fmm-rpm/index_e.html.Google Scholar
Health Council of Canada. (2005a). Health care renewal in Canada: Accelerating change. Toronto: Author Retrieved 12 February 2005 from http://www.healthcouncilcanada.ca/docs/rpts/2005/Accelerating_Change_HCC_2005.pdf.Google Scholar
Health Council of Canada. (2005b). Home care. Background paper to accompany Health care renewal in Canada: Accelerating change. Toronto: Author Retrieved 20 July 2006 from http://www.healthcouncilcanada.ca/docs/papers/2005/BkgrdHomecareENG.pdf.Google Scholar
Health Council of Canada. (2006). Home care. Excerpt from Health care renewal in Canada: Clearing the road to quality. Toronto: Author Retrieved 20 July 2006 from http://www.healthcouncilcanada.ca/docs/rpts/2006/EX_Home_EN.pdf.Google Scholar
Hollander, M. (2003). Unfinished business: The case for chronic home care services. Victoria, BC: Hollander Analytical Services Retrieved 12 January 2005 from http://www.hollanderanalytical.com/main.html.Google Scholar
Hollander, M., & Chappell, N. (2002). Final report of the national evaluation of the cost-effectiveness of home care. (synthesis report). Victoria, BC: Hollander Analytical Services. Retrieved 12 January 2005 from http://www.homecarestudy.com/.Google Scholar
Holstein, M.B., & Minkler, M. (2003). Self, society, and the “new gerontology.”. Gerontologist, 43, 787–796.Google Scholar
Home Support Action Group (2002). Krogh, K.. Home support: An essential component of health and citizenship for Canadians with disabilities. Victoria, BC Author. Retrieved 21 July 2006 from http://www.hc-sc.gc.ca/francais/pdf/romanow/HomeSupportActionGroup.pdf.Google Scholar
Iannantuono, A., & Eyles, J. (1997). Meanings in policy: A textual analysis of Canada's “Achieving Health for All” document. Social Science and Medicine, 44, 1611–1621.Google Scholar
Janicki, M.P., Ansello, E.F. (2000). Supports for community living: Evolution of an aging with lifelong disabilities movement. In Janicki, M.P., & Ansello, E.F.. (Eds.), Community supports for aging adults with lifelong disabilities (pp. 529–547). Baltimore, MD: Brookes.Google Scholar
Jonsen, A.R., & Butler, L.H. (1975). Public ethics and policy making. Hastings Center Report, 5(4), 19–31.CrossRefGoogle ScholarPubMed
Kaufman, S.R., Shim, J.K., & Russ, A.J. (2004). Revisiting the biomedicalization of aging: Clinical trends and ethical challenges. Gerontologist, 44, 731–738.Google Scholar
Keefe, J.M. (2002). Home and community care. In Stephenson, M., & Sawyer, E.. (Eds.), Continuing the care: The issues and challenges for long-term care (pp. 109–141). Ottawa: CHA.Google Scholar
Kelman, H.C., Warwick, D.P. (1978). The ethics of social intervention: Goals, means, and consequences. In Bermant, G., Kelman, H.C., & Warwick, D.P.. (Eds.), The ethics of social intervention (pp. 3–33). Washington, DC: Hemisphere.Google Scholar
Kennedy, J., Minkler, M. (1999). Disability theory and public policy: Implications for critical gerontology. In Minkler, M., & Estes, C.L. (Eds.), Critical gerontology: Perspectives from political and moral economy (pp. 91–108). Amityville, NY: Baywood.Google Scholar
Kenny, N. (2004). What's fair? Ethical decision-making in an aging society. Research Report F/44. Ottawa: Canadian Policy Research Networks Retrieved 26 July 2006 from http://www.cprn.org/en/doc.cfm?doc=776.Google Scholar
Levine, C., Murray, T.H. (2004). Caregiving as a family affair: A new perspective on cultural diversity. In Levine, C., & Murray, T.H. (Eds.), The cultures of caregiving: Conflict and common ground among families, health professionals, and policy makers (pp. 1–12). Baltimore, MD: Johns Hopkins University Press.CrossRefGoogle Scholar
Lloyd, L. (2004). Mortality and morality: Ageing and the ethics of care. Ageing & Society, 24, 235–256.Google Scholar
MacAdam, M. (2000). Home care: It's time for a Canadian model. Healthcare Papers, 1, 9–36.Google Scholar
Marmor, T.R., Okma, K.G.H., & Latham, S.R. (2002). National values, institutions and health policies: What do they imply for medicare reform? Discussion paper 5. Ottawa: Commission on the Future of Health Care in Canada. Retrieved 19 August 2004 from http://www.hc-sc.gc.ca/english/care/romanow/hcc0564.html.Google Scholar
Minkler, M., & Estes, C.L. (1999). Critical gerontology: Perspectives from political and moral economy. Amityville, NY: Baywood.Google Scholar
National Advisory Council on Aging. (2000). The NACA position on home care. Ottawa: Author. Retrieved January 12, 2005, from http://www.naca.ca/position/20_homecare/pdf/homecare_e.pdf.Google Scholar
Neysmith, S.M. (1993). Developing a home care system to meet the needs of aging Canadians and their families. In Hendricks, J., & Rosenthal, C.J. (Eds.), The remainder of their days: Domestic policy and older families in the United States and Canada (pp. 145–167). New York: Garland.Google Scholar
Parks, J.A. (2003). No place like home? Feminist ethics and home health care. Bloomington, IN: Indiana University Press.Google Scholar
Pedlar, A., & Hutchinson, P. (2000). Restructuring human services in Canada: Commodification of disability. Disability & Society, 15, 637–651.CrossRefGoogle Scholar
Penning, M.J. (1996). Placing informal care on the policy agenda. Victoria, BC: University of Victoria Centre on Aging Paper presented in a symposium on “Bridging policy and research on aging in Canada,” Aylmer, Quebec.Google Scholar
Peters, S. (1995). Exploring Canadian values: A synthesis report. Ottawa: Canadian Policy Research Networks Retrieved 26 July 2006 from http://www.cprn.org/en/doc.cfm?doc=149.Google Scholar
Potter, R.B. (1969). War and moral discourse. Richmond, VA: Knox.Google Scholar
President's Council on Bioethics. (2005). Taking care: Ethical caregiving in our aging society. Washington, DC: Author.Google Scholar
Preto, N., & Mitchell, I. (2004). Ethical issues in home care: Summary and overview of presentations and discussions at the Annual Meeting of the Canadian Bioethics Society. October 28–31, 2004. Retrieved 20 July 2006 from http://www.hc-sc.gc.ca/hcs-sss/pubs/care-soins/2004-ethi-homedomicile/index_e.html.Google Scholar
Proust, M. (1981). The Captive. In Moncrieff, C.K.S., Kilmartin, R., & Mayor, A. (Trans.), Remembrance of things past (Vol. 3).. New York: Random House.Google Scholar
Rein, M. (1983). Value-critical policy analysis. In Callahan, D., & Jennings, B. (Eds.), Ethics, the social sciences, and policy analysis (pp. 83–111). New York: Plenum.Google Scholar
Reindal, S.M. (1999). Independence, dependence, interdependence: Some reflections on the subject and personal autonomy. Disability & Society, 14, 353–367.Google Scholar
Roe, E. (1994). Narrative policy analysis. Durham, NC: Duke University Press.Google Scholar
Roeher Institute. (2002). Moving in unison into action: Towards a policy strategy for improving access to disability support. North York, ON: Author.Google Scholar
Roeher Institute. (2003). Caregivers of persons with disabilities in Canada … and policy implications. North York, ON: Author.Google Scholar
Rowe, J.W., & Kahn, R.L. (1987). Human aging: Usual and successful. Science, 237, 143–149.Google Scholar
Rowe, J.W., & Kahn, R.L. (1997). Successful aging. Gerontologist, 37, 433–440.Google Scholar
Shapiro, E. (2002). Health Transition Fund Synthesis series: Home care. Ottawa: Health Canada Publications Retrieved 20 July 2006 from http://www.hc-sc.gc.ca/hcs-sss/pubs/care-soins/2002-htf-fass-home-domicile/index_e.html.Google Scholar