It is estimated that more than 650,000 individuals with intellectual disabilities live with caregivers who are 60 or more years old. As they age, they face end-of- life issues in relation to their caregivers, as well as their own health care needs. This article examines some of the major issues concerning end- of-life care for people with an intellectual disability, presents findings of a recent national survey on end-of-life care vis-á-vis the policy implications, and describes some of the emerging strategies and innovations designed to promote improved end-of-life care.
Get full access to this article
View all access options for this article.
References
1.
Albrecht, G.L. (1992). The disability business: Rehabilitation in America . Newbury Park, CA: Sage.
2.
Ansello, E., & Coogle, C. (2000). In M. Janicki & E.Ansello (Eds.), Community supports for aging adults with lifelong disabilities (pp. 457—475). Baltimore : Brookes.
3.
Barbera, T., Pitch, R., & Howell, M. (1989). Death and dying: A guide for staff serving adults with mental retardation. Boston: Exceptional Parent Press.
4.
Blanck, P., Kirschner, K., & Bienen, L. (1997). Socially−assisted dying and people with disabilities: Some emerging legal, medical, and policy implications. Mental and Physical Disability Law Reporter, 21, 538—543.
5.
Botsford, A. (2000a). Integrating end of life care into services for people with an intellectual disability. Social Work in Health Care, 31(1), 35—48.
6.
Botsford, A. (2000b). Dealing with the end of life. In M. Janicki & E Ansello (Eds.), Community supports for aging adults with lifelong disabilities (pp. 415—432). Baltimore: Brookes.
7.
Botsford, A. (2004). The status of end of life care in organizations and agencies providing services for older people with a developmental disability . American Journal of Mental Retardation, 109, 421—428.
8.
Botsford, A., & Force, L.T. (2000a). Cuido al final de la vida:una guia de apoyo para envejecientes con incapaidades intelectuales y sus familias. Albany: New York State Association for Retarded Citizens.
9.
Botsford, A., & Force, L.T. (2000b). End of life care: A guide for supporting older people with intellectual disabilities and their families. Albany: New York State Association for Retarded Citizens.
10.
Braddock, D. (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation , 37(2), 1555—161.
11.
Braddock, D. (2002) Disability at the dawn of the 21st century and the state of the states. Washington, DC: American Association on Mental Retardation.
12.
Carder, M. (1987). Journey into understanding mentally retarded people's experiences around death. Journal of Pastoral Care, 41, 18—3l.
13.
Deutsch, H. (1985). Grief counseling with the mentally retarded clients . Psychiatric Aspects of Mental Retardation Reviews, 4(5), 17—20.
14.
Edgerton, R.B. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley: University of California Press.
15.
Emerson, P. (1977). Covert grief reactions in mentally retarded clients . Mental Retardation, 15(6), 46—47.
16.
Fauri, D., & Grimes, D. (1994). Bereavement services for families and peers of deceased residents of psychiatric institutions. Social Work , 39, 185—190.
17.
Flower, C.D. (1994). Legal guardianship: The implications for law, procedure, and policy for the lives of persons with developmental disabilities . In M. F. Hayden & B. H. Abery (Eds.), Challenges for a service system in transition (pp. 427—447). Baltimore: Brookes.
18.
Frank, G. (2000). Venus on wheels: Two decades of dialogue on disability, biography and being female in America. Berkeley: University of California Press.
19.
Friedman, R.I. (1998). Use of advance directives: facilitating health care decisions by adults with mental retardation and their families. Mental Retardation, 36(6), 444—456.
20.
Groce, N.E. (1997). Women with disabilities in the developing world: Arenas for policy revision and programmatic change. Journal of DisabilityPolicy Studies, 8, 177—193.
21.
Hanson, K.W., Neuman, P., Dutwin, D., & Kasper, J. (2003). Understanding the health care needs and experiences of people with disabilities: Findings from a 2003 survey (Kaiser Family Foundation Report). Available online from http://www.kff.org/medicare/121203package.cfm
22.
Harper, D.C., & Wadsworth, J.S. (1993). Grief in adults with mental retardation: Preliminary findings. Research in Developmental Disabilities, 14, 313—330.
23.
Hedger, C., & Smith, M.J.D. (1993). Death education for older adults with developmental disabilities. Activities, Adaptation andAging, 18, 29—36.
24.
Johnson, H.M. (2003, February). Unspeakable conversations: The case for my life. New York Times Magazine, 16, 152.
25.
Johnson, R.W. (2001). Grant results brief: National leadership summit on self− determination, consumer direction and consumer control among people with disabilities. Available online from http://www.rwjf.org
26.
Kapp, M.B. (1990). Evaluating decisionmaking capacity in the elderly: A review of recent literature. Journal of Elder Abuse & Neglect, 2(3−4), 15—29.
27.
Kapp, M.B. (1991). Health care decision making by the elderly: I get by with a little help from my family. The Gerontologist , 31, 619—623.
28.
Kauffman, J. (1994). Mourning and mental retardation. Death Studies, 18, 257—271.
29.
Kennedy, J. (2002). Disability and aging—Beyond the crisis rhetoric: Introduction to the special issue. Journal of DisabilityPolicy Studies, 12(4), 226—228.
30.
King, A. (2002, August). End−of−life care. Paper presented at the Qualified Mental Retardation Professionals APM. Snowbird, Utah.
31.
Kloeppel, D., & Hollins, S. (1989). Double handicap: Mental retardation and death in the family. Death Studies, 13, 31—38.
32.
Lavin, C. (1989). Disenfranchised grief and the developmentally disabled. In K. Doka (Ed.), Disenfranchisedgrief: Recognizing hidden sorrow (pp. 229—237). Lexington, MA: Lexington.
33.
Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press.
34.
Luchterhand, C. (1998). Mental retardation and grief following a death loss: Information for families and other caregivers. Arlington, TX: The Arc.
35.
Martin, D., Emmanuel, L., & Singer, P. (2000). Planning for the end of life. Lancet, 356, 1672—1686.
36.
McClimens, A. (2003). The organization of difference: People with intellectual disabilities and the social model of disability. Mental Retardation , 41(1), 35—46.
37.
Midwest Bioethics Center. (1996). Health care treatment decision−making guidelines for adults with developmental disabilities. Bioethics Forum, Fall, S/1—S/8.
38.
Midwest Bioethics Center. (n.d.). Guidelines for the determination of decisional incapacity. Procedures for ethics committees. Self−assessment tool and resource sheet, A guide to assist in case consultation. Case review checklist. Available online from http://www.midbio.org
39.
National Institute on Disability and Rehabilitation Research. (2003). Changing concepts of health & disability: State of the science conference and policy forum. Available online from http://www.ed/gov/offices/OSERS/NIDRR
40.
Neri, M., & Kroll, T. (2003). Understanding the consequences of access barriers to health care: Experiences of adults with disabilities. Disability and Rehabilitation, 25(2), 85—96.
41.
National Core Indicators Phase IV. (2002). Adult family survey final report (A collaboration of the National Association of State Developmental Disability Directors and the Human Services Research Institute, Publication Code 786). Cambridge, MA: Human Services Research Institutes
42.
OAC 340:100-5-262 (1993, April 10). Oklahoma Department of Health Services. Available online from http://www.policy.okdhs.org/ch100/340− 100−5/340_5−26.2._End−of−life_issues.htm
43.
Pernick, M.S. (1996). The black stork: Eugenics and the death of “defective babies” in American medicine and motion pictures since 1915. New York: Oxford University Press.
44.
Scheer, J., Kroll, T., Neri, M., & Beatty, P. (2003). Access barriers for persons with disabilities: The consumers' perspective. Journal of DisabilityPolicy Studies , 13(4), 221—230.
45.
Service, K., Lavoie, D., & Herlihy, J. (1999). Coping with losses, death, and grieving. In M. P. Janicki & A. Dalton (Eds.), Dementia, aging and intellectual disabilities (pp. 330—351). Philadelphia: Taylor & Francis.
46.
Singer, P. (1994). Rethinking life and death: The collapse of our traditional ethics. Melbourne: The Text Publishing Co.
47.
Sterns, H.L., Kennedy, E.A., & Sed, C.M. (2000). Person−centered planning for later life: Death and dying—A curriculum for adults with mental retardation. Chicago: University of Illinois at Chicago, Rehabilitation Research and Training Center on Aging with Developmental Disabilities.
48.
Stowe, M.J., & Turnbull, H.R. (2001). Tools for analyzing policy “on the books” and policy “on the streets.” Journal of DisabilityPolicy Studies, 12(3), 206.
49.
Taylor, S.J. (April, 2000). “Death with dignity” for people who are not dying: The Gleitsman Foundation is wrong that Kevorkian stands for social justice. Syracuse, NY: Syracuse University, Center on Human Policy.
50.
The Resistance. (n.d.). Brief of Amici Curiae Not Dead Yet et al. in support of Appellants and Requesting Reversal. Available online from http://www.notdeadyet.org/docs/schaivobrief.html
51.
Trent, J.W. (1994). Inventing the feeble mind: A history of mental retardation in the United States. Berkeley: University of California Press.
52.
von Guten, C.F., Ferris, F.D., & Emmanuel, L.L. (2000). Ensuring competency in end of life care: Communication and relational skills. Journal of the American Medical Association, 284(23), 3051—3058.
53.
Wadsworth, J., & Harper, D. (1991). Grief and bereavement in mental retardation: A need for a new understanding. Death Studies, 15, 281—292.
54.
Wallack, S.S., Sciegaj, M., & Long, L. (2002). Short and long−term trends affecting Medicaid policy for persons with disability, chronic illness and special need. Journal of DisabilityPolicy Studies, 12(4), 236.
55.
Yanok, J., & Beifus, J. (1993). Communicating about loss and mourning: Death education for individuals with mental retardation. Mental Retardation , 31, 144—147.
