Hostname: page-component-7479d7b7d-c9gpj Total loading time: 0 Render date: 2024-07-12T01:52:39.790Z Has data issue: false hasContentIssue false

Aging with an Intellectual Disability: A Review of Canadian Literature

Published online by Cambridge University Press:  29 November 2010

Penny Salvatori
Affiliation:
McMaster University
Mary Tremblay
Affiliation:
McMaster University
Judith Sandys
Affiliation:
Ryerson Polytechnic University
Donna Marcaccio
Affiliation:
Rygiel Homes

Abstract

The movement away from institutional care to community living, along with improved nutrition and health care, has led to an increased lifespan for individuals with intellectual disabilities. In Canada, those who were born before 1945 represent the first significant group to grow old. Despite the increasing numbers of these individuals, relatively little is known about them, their life experiences, or their needs. They remain a largely invisible, undervalued, and often overlooked population, and are seldom the focus of new policy or program initiatives. This review of Canadian literature reports on issues related to the prevalence, life expectancy and early aging of individuals with intellectual disabilities, describes the impact of changes in social policy on their life experiences, outlines the needs and expectations of older adults and their families and, finally, suggests future directions for policy development and research in Canada.

Résumé

On constate une hausse de la longévité chez les personnes ayant des incapacités intellectuelles, due à la modification de leur encadrement — de la vie institutionnelle à la vie communautaire — et à l'amélioration de la nutrition et des soins de santé. Les individus nés avant 1945 au Canada, représentent le premier groupe d'importance à atteindre la vieillesse. Malgré la croissance de ce groupe d'individus, on sait très peu de choses sur leurs expériences de vie et leurs besoins. En grande partie, cette population demeure invisible, sous-évaluée et souvent oubliée, et n'est que rarement le point d'intérêt de nouvelles politiques ou de programmes d'initiatives. Cet examen des publications médicales canadiennes sur les sujets traitant de fréquence, de longévité et de vieillesse prématurée des personnes ayant des incapacités intellectuelles recouvre trois points. D'abord il expose l'impact des changements dans les politiques sociales sur leurs expériences de vie, ensuite il trace les grandes lignes des besoins et des attentes des personnes plus âgés ainsi que de leurs familles et finalement il suggère de nouvelles approches, dans l'avenir, des politiques de développement et de recherches au Canada.

Type
Articles
Copyright
Copyright © Canadian Association on Gerontology 1998

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Anglin, B. (1981). They never asked for help:A study on the needs of elderly retarded people in Metro Toronto. Maple, ON: Belsten Publishing.Google Scholar
Annable, G. (1989). Supported employment in Canada 1988 final report. Winnipeg, MN: The Canadian Council on Rehabilitation and Work.Google Scholar
Badry, D., Groeneweg, G., Vrbancic, M., McDonald, L., & Hornick, J. (1989). Service needs of community and institution-based older persons with a developmental handicap in Alberta, Canada. Australian and New Zealand Journal of Developmental Disabilities, 15, 257266.CrossRefGoogle Scholar
Balakrishnan, T., & Wolf, L. (1976). Life expectancy of mentally retarded persons in Canadian institutions. American Journal of Mental Deficiency, 80, 650662.Google ScholarPubMed
Bogdan, R., Taylor, S., & Racino, J. (1991). Life in the community: Case studies of organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes.Google Scholar
Brown, R. (1989). Aging, disability and quality of life: A challenge for society. Canadian Psychology, 30, 551559.CrossRefGoogle Scholar
Brown, R. (1993). Quality of life issues in aging and intellectual disability. Australian and New Zealand Journal of Developmental Disabilities, 18, 219227.CrossRefGoogle Scholar
Canadian Association For Community Living. (1987). Community Living 2000. Toronto, ON: Author.Google Scholar
Chappell, A.L. (1992). Towards a sociological critique of the normalisation principle. Disability, Handicap & Society, 7(1), 3551.CrossRefGoogle Scholar
Chornoboy, E., & Harvey, C. (1988). Relationship between the housing facility type of aging: Persons who are developmentally disabled and their activities. Education and Training in Mental Retardation, 23, 147155.Google Scholar
Crandall, D. (1990, February 7). Living together, learning together. Waterloo Chronicle, p. 11.Google Scholar
Crawford, C. (1994). Intellectual disability across the lifespan. Unpublished manuscript, Roeher Institute, Downsview, ON.Google Scholar
Dalton, A., & Crapper, D. (1984). Incidence of memory deterioration in aging persons with down's syndrome. In Berg, J. (Ed.), Perspectives and Progress in Mental Retardation (pp. 5562). Baltimore, MD: University Park Press.Google Scholar
Dalton, A., & Wisniewski, H., (1990). Down's syndrome and the dementia of Alzheimer's disease. International Review of psychiatry, 2, 4352.CrossRefGoogle Scholar
Dossa, P. (1990). Toward social system theory: Implications for older people with developmental disabilities and service delivery. International Journal of Aging and Human Development, 30, 303319.CrossRefGoogle ScholarPubMed
Dossa, P. (1992). Ethnography as narrative discourse: Community integration of people with developmental disabilities. International Journal of Rehabilitation Research, 15, 114.CrossRefGoogle ScholarPubMed
Dupont, A., Vaeth, M., & Videbech, P. (1986). Mortality and life expectancy of Down's syndrome in Denmark. Journal of Mental Deficiency Research, 30, 111120.Google ScholarPubMed
Edgerton, R., & Gaston, M. (1991). I've seen it all: Lives of the older person with mental retardation in the community. Baltimore, MD: P.B. Brookes.Google Scholar
Evasuk, S. (1990, November, 24). Who will care for them? Toronto Star, pp. H1, H3.Google Scholar
Eyman, R., Grossman, H., Chaney, R., & Call, T. (1990). The life expectancy of profoundly handicapped people with mental retardation. New England Journal of Medicine, 323, 584589.CrossRefGoogle ScholarPubMed
Eyman, R., Grossman, J., Tarjan, G., & Miller, C. (1987). Life Expectancy and Mental Retardation. Washington, DC: American Association on Mental Retardation.Google ScholarPubMed
Fine, S. (1989, October 24). Mentally handicapped feel shortage of care in Metro Toronto area. The Globe and Mail, p. 19.Google Scholar
Forbes, W., Jackson, J., & Kraus, A., (1987). Institutionalization of the Elderly in Canada. Toronto, ON: Butterworths.Google Scholar
Forssman, H., & Akesson, H. (1970). Mortality of the mentally deficient: A study of 12,903 institutionalized subjects. Journal of Mental Deficiency Research, 14, 276294.Google Scholar
Fryers, T. (1986). Survival in Down's Syndrome. Journal of Mental Deficiency Research, 30, 101110.Google ScholarPubMed
Gallagher, R., & Lowry, R. (1975). Longevity in Down's Syndrome in British Columbia. Journal of Mental Deficiency Research, 9, 157163.Google Scholar
Gibson, D., Groeneweg, G., Jerry, P., & Harris, A. (1988). Age and pattern of intellectual decline among Down's Syndrome and other mentally retarded adults. International Journal of Rehabilitation Research, 11, 4755.CrossRefGoogle ScholarPubMed
Gold, D. (1994). “We don't call it a ‘circle’”: The ethos of a support group. Disability & Society, 9, 435452.CrossRefGoogle Scholar
Grant, B. (1985). Home again. Canadian Journal on Mental Retardation, 35, 1116.Google Scholar
Grant, G. (1986). Older carers, interdependence and the care of mentally handicapped adults. Aging and Society, 6, 333351.CrossRefGoogle Scholar
Greenberg, J., Seltzer, M., & Greenley, J. (1993). Aging parents of adults with disabilities: The gratifications and frustrations of later-life caregiving. The Gerontologist, 33, 542550.CrossRefGoogle ScholarPubMed
Greenland, C. (1962). Services for the mentally retarded in Ontario, 1870–1930. Ontario History, 56, 267274.Google Scholar
Groeneweg, G. (1992). A Canadian perspective. In Moss, S. (Ed.), Aging and developmental disabilities: Perspectives from nine countries (pp. 2936). Durham, NH: University of New Hampshire.Google Scholar
Hand, J., Trewby, M., & Reid, P. (1994). When a family member has an intellectual handicap. Disability and Society, 9, 167184.CrossRefGoogle Scholar
Herbst, D., & Baird, D. (1983). Nonspecific mental retardation in British Columbia as ascertained through a registry. American Journal of Mental Deficiency, 87, 506513.Google ScholarPubMed
Janicki, M. (1988). Aging and persons with mental handicap and developmental disabilities. Journal o f Practical Approaches to Developmental Handicap, 12, 913.Google Scholar
Janicki, M., & Seltzer, M., (Eds.). (1990). Aging and developmental disabilities: Challenges for the 1990s — Proceedings of the Boston roundtable on research issues and applications in aging and developmental disabilities. Boston, MA: World Rehabilitation Fund.Google Scholar
Jones, K. (1992). Listening to hidden voices: Power, domination, resistance and pleasure within Huronia Regional Centre. Disability, Handicap & Society, 7, 339348.Google Scholar
Jongbloed, L., & Crichton, A. (1990). Difficulties in shifting from individualistic to socio-political policy regarding disability in Canada. Disability, Handicap & Society, 5(1), 2536.Google Scholar
Kappel, B., Watson, H., Kappel, B., & Sproul, P. (1995). An external review of Rygiel homes. Hamilton, ON: Ontario Ministry of Community and Social Services.Google Scholar
Lord, J. (1985a). Creating responsive communities: Reflections on aprocess of social change. Toronto, ON: Ontario Association for the Mentally Retarded.Google Scholar
Lord, J. (1985b). Creating responsive communities: A summary of lessons learned from Ontario Comserv. Toronto, ON: Ontario Association for the Mentally Retarded.Google Scholar
Lord, J., & Farlow, D. (1987). Families and empowerment: A new dynamic in deinstitutionalisation. Entourage, 2, 2634.Google Scholar
Lord, J., & Pedlar, A. (1991). Life in the community: Four years after the closure of an institution. Mental Retardation, 29, 213221.Google ScholarPubMed
Lubin, R., & Keily, M. (1985). Epidemiology of aging in developmental disabilities. In Janicki, M. & Wisnieski, H., (Eds.), Aging and developmental disabilities (pp. 95113). Baltimore, MD: Paul H. Brookes.Google Scholar
Mahon, M., Mactavish, J., Mahon, M., & Searle, M. (1995). Older adults with a mental disability: Exploring the meaning of independence. Winnipeg, MN: Health, Leisure and Human Performance Insititute Faculty of Physical Education and Recreation Studies, The University of Manitoba.Google Scholar
Marcacelo, M. (1991). A will to learn: The experiences of a self-advocate in the education system. In Porter, G. & Richler, D. (Eds.), Changing Canadian schools: Perspectives on disability and inclusion (pp. 101104). Downsview, ON: Roeher Institute.Google Scholar
Marshall, V. (Ed.). (1987). Aging in Canada: Social perspectives (2nd ed.). Markham, ON: Fitzhenry & Whiteside.Google Scholar
Marshall, V., & McPherson, B. (Eds.). (1994). Aging: Social perspectives. Toronto, ON: Broadview Press.Google Scholar
McDonald, L., Badry, D., & Meuller, C. (1988). The elderly physically and developmentally handicapped: An analysis of service delivery. Canadian Journal on Aging, 7(2), 134147.CrossRefGoogle Scholar
McLaren, A. (1990). Our own master race: Eugenics in Canada, 1885–1945. Toronto, ON: McClelland & Stewart Inc.CrossRefGoogle Scholar
McLaughlin, P. (1979). Guardianship. Downsview, ON: National Institute on Mental Retardation.Google Scholar
McPherson, B. (1990). Aging as a social process (2nd ed.). Toronto, ON: Butter-worths.Google Scholar
Murphy, S., & Rogan, P. (1995). Closing the shop: Conversion from sheltered to integrated work. Baltimore, MD: Brookes Publishing Co.Google Scholar
National Institute on Mental Retardation. (1981). Orientation manual on mental retardation. Downsview, ON: Author.Google Scholar
National Institute on Mental Retardation. (1982). Experimenting with social change. Downsview, ON: Author.Google Scholar
O'Brien, J. (1994). Down stairs that are never your own: Supporting people with developmental disabilities in their own home. Mental Retardation, 32, 16.Google Scholar
Ontario Ministry of Community and Social Services. (1987). Challenges and opportunities. Community living for people with developmental handicaps. Toronto, ON: Queen's Printer for Ontario.Google Scholar
Ontario Ministry of Community and Social Services. (1997a). Making services work for people. Toronto, ON: Queen's Printer for Ontario.Google Scholar
Ontario Ministry of Community and Social Services. (1997b). Reinvestment strategy for adults with a developmental disability. Toronto, ON: Queen's Printer for Ontario.Google Scholar
Panitch, M. (1983). Mental retardation and aging. Canada's Mental Health, 31, 610.Google Scholar
Park, P. (1991). A real home. Entourage, 6, 19.Google Scholar
Pedlar, A., Lord, J., & Van Loon, M. (1989). The process of supported employment and quality of life. Kitchener, ON: Centre for Research and Education in Human Services.Google Scholar
Pike, K., & Steinmann, P. (1991). Connections; A planning guide for parents of sons and daughters with a mental handicap. Saint John, NB: Fundy Regional Council Association For Community Living.Google Scholar
Pike, K., & Steinmann, P. (1993). Connections: A planning guide for parents of sons and daughters with a mental handicap. Brampton, ON: Brampton Caledon Community Living.Google Scholar
Porter, G., & Richler, D. (1991). Changing Canadian schools: Perspectives on disability and inclusion. Toronto, ON: Roeher Institute.Google Scholar
Ramsay, J. (1987). Older developmental handicapped adults: How do we respond? Thunder Bay, ON: Committee for Developmentally Handicapped Seniors, Lakehead Association for the Mentally Retarded.Google Scholar
Rasmussen, D., & Sobsey, D. (1994). Age, adaptive behaviour and Alzheimer's disease in Down syndrome: Cross sectional and longitudinal analyses. American Journal of Mental Retardation, 99, 151165.Google ScholarPubMed
Renwick, R., Brown, L, & Raphael, D. (1994). Quality of life: Linking a conceptual approach to service provision. Journal of Developmental Disabilities, 3(2), 3244.Google Scholar
Richards, B., & Sylvester, P. (1969). Mortality trends in mental deficiency institutions. Journal of Mental Deficiency Research, 13, 276292.Google ScholarPubMed
Roberto, K. (Ed.). (1993). The elderly caregiver. Newbury Park, CA: Sage Publications.Google Scholar
Roeher Institute. (1993). Community Living and Intellectual Disability in Canada. Toronto, ON: Author.Google Scholar
Sandys, J. (1993). “It does my heart good”: The perceptions of employers who have hired people with intellectual disabilities through supported employment programs. Unpublished dissertation. University of Toronto, Toronto, ON.Google Scholar
Sandys, J., & Leaker, D. (1988). The impact of integrated employment on leisure lifestyles. Entourage, 3, 1723.Google Scholar
Sandys, J., & Stafford, N. (1987). Vacations unlimited — we all need a holiday. Entourage, 2, 610.Google Scholar
Seltzer, M., & Krauss, M. (1994). Aging parents with coresident adult children: The impact of lifelong caregiving. In Seltzer, M., Krauss, M., & Janicki, M., Life course perspectives on adulthood and old age (pp. 318). Washington, DC: American Association of Mental Retardation.Google Scholar
Seltzer, M., Krauss, M., & Janicki, M. (Eds.). (1994). Life Course Perspectives on Adulthood and Old Age. Washington, DC: American Association of Mental Retardation.Google Scholar
Sharman, L. (1991, January 5). Reading signs of life in the eyes of her sister. The Globe and Mail.Google Scholar
Simmons, H., (1982). From asylum to welfare. Downsview, ON: National Institute on Mental Retardation.Google Scholar
Smith, C. (1989). Individuals in the community. Entourage, 4, 710.Google Scholar
Sokol, A. (1993, April 27). Will there be a place for Paul? The Toronto Star, B1–B2.Google Scholar
Sokol, A. (1994, December 24). Centre a lifeline for disabled adults. The Toronto Star, H14.Google Scholar
Studholme, H. (1993). The inclusion of older adults who live with a mental handicap: A report on community seminars. Winnipeg, MN: Association for Community Living Manitoba.Google Scholar
Sutton, E., Factor, A., Hawkins, B., Heller, T., & Seltzer, G. (Eds.). (1993). Older adults with developmental disabilities. Baltimore, MD: Paul H. Brookes.Google Scholar
Thase, M. (1982). Longevity and mortality in Down's Syndrome. Journal of Mental Deficiency Research, 26, 177192.Google ScholarPubMed
Wehman, P., & Kregel, J. (1994). At the crossroads: Supported employment tenyears later. Richmond, VA: Virginia Commonwealth University.Google Scholar
West, M., Reveil, W., & Wehman, P. (1992). Achievements and challenges I: A five-year report on consumer and system outcomes from the supported employment initiative. Journal of the Association for Persons with Severe Handicaps, 17, 227235.CrossRefGoogle Scholar
White, M. (1993). A future with rights: The right future. Abilities, 16, 4447.Google Scholar
Wolf, L., & Wright, R. (1987). Changes in life expectancy of mentally retarded persons in Canadian institutions: A 12 year comparison. Journal of Mental Deficiency Research, 31, 4159.Google ScholarPubMed
Wolfensberger, W. (1972). Normalization: The principle of normalization in human services. Toronto, ON: Leonard Crainford.Google Scholar
Wolfensberger, W. (1984). A reconceptualization of normalization as social role valorization. Mental Retardation, 34, 2225.Google Scholar
Wolfensberger, W. (1992). A brief introduction to social role valorization as a high-order concept for structuring human services. Syracuse, NY: Training Institute For Human Services, Planning, Leadership and Change Agentry.Google Scholar
Wolfensberger, W. (1994). Let's hang up “Quality of Life” as a hopeless term. In Goode, E. (Ed.), Quality of life for persons with disabilities (pp. 285321). Cambridge, MA: Brookline Books.Google Scholar
Zigman, W., Schupf, N., Zigman, A., & Silverman, W. (1993). Aging and Alzheimer disease in people with mental retardation. In N.W., Bray (Ed.), International Review of Research in Mental Retardation, 19, 4170.CrossRefGoogle Scholar
Zimmerman, S. (1991). Ageing and retirement. Letters of L'Arche, 68, 58.Google Scholar