End-of-Life Care for People with Developmental Disabilities Bibliography

December 2004

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This bibliography is divided into the following sections: End-of-life care for individuals with developmental disabilities, grief and bereavement, developmental disabilities (aging, healthcare, miscellany), advance planning and healthcare decision making, and general end-of-life care. Pertinent websites are listed at the end.

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End-of-Life Care for Individuals with Developmental Disabilities

Barbera, T., Pitch, R. & Howell, M. (1989). Death and dying: A guide for staff serving adults with mental retardation. Boston: Exceptional Parent Press.
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.
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, 109/5: 421-428.
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.
Botsford, A. (2000b). Dealing with the end of life. In M. Janicki and E Ansello, (Eds.), Community supports for aging adults with lifelong disabilities, 415-432. Baltimore, MD: Paul H. Brookes.
Botsford, A. (1998). Devalued deaths: Integrating hospice care into services for people with disabilities and their families. (Abstract). Gerontologist, 31: 146.
Botsford, A., & Force, L.T. (2000). End of Life Care: A guide for supporting older people with intellectual disabilities and their families. Albany, NY: NYSARC.
Botsford, A., & Force, L.T. (2000). Cuidado al final de la vida: Una guia de apoyo para envejecientes con incapacidades intelectuales y sus familias. Albany, NY: NYSARC.
Botsford, A., Force, L., & Janicki, M (1999). Supporting people with intellectual disabilities at the end of life: Evaluation of a teaching model for carers and implications for policy. (Abstract). Gerontologist, 39: 186.
Botsford, A., & King, A. (In press). End-of-life care policies for people with an intellectual disability: Issues and strategies. Journal of Disability Policy Studies.
Brown, H., Burns, S., & Flynn, M. (2003). ‘Please don’t let it happen on my shift!’ Supporting staff who are caring for people with learning disabilities who are dying. Learning Disability Review, 8/2: 32-41.
Cavanaugh, P. E. (December 2004). At home: Care options at the end of life. Exceptional Parent 34/12: 46-48.
Chaney, R. H., & Eyman, R. K. (June 2000). Patterns in mortality over 60 years among persons with mental retardation in a residential facility. Mental Retardation 38/3: 289-293.
Chochinov, H. M. (2002). Dignity-conserving care—A new model for palliative care: Helping the patient feel valued. Journal of the American Medical Association, 287/17: 2253-2260.
Community State Partnerships to Improve End-of-Life Care. (November 2001). Advance care planning-Part 1: Approaches for patients from marginalized groups. State Initiatives in End-of-Life Care, 12. Available at: http://www.practicalbioethics.org/FileUploads/SI_12.pdf .
Jones, A. (2003). Palliative care and people with learning disabilities. Learning Disability Practice, 6/7: 30-37.
Jones, A., & Tuffrey-Wijne, I. Positive Approaches to Palliative Care Workbook. Worcestershire: British Institute for Learning Disabilities. Available at http://www.bild.org.uk/03books_health.htm#09PositiveApproachesToPalliativeCareWorkbook
Kingsbury, L. A. (November 2004). Person centered planning in the communication of end-of-life wishes with people who have developmental disabilities. Exceptional Parent 34/11: 44-46.
Lohiya, G., Tan-Figueroa, L., & Crinella, F. (2003). End-of-life care for a man with developmental disabilities. Journal of the American Board of Family Practice, 16/1: 58-62.
McCallion, P., & McCarron, M. (2004). Intellectual disabilities and dementia. In K. Doka (Ed.). Living with Grief: Alzheimer’s disease. (pp. 67-84).Washington, DC: Hospice Foundation of America.
Rader, R. (June 2003). Editor’s Desk: Last Passages. Exceptional Parent Magazine.
Stein, G. (2003). Promoting palliative care for people with a disability. Social Work Leadership Development Awards - In the Spotlight. Available at: http://swlda.org.
Stein, G., & Esralew, L. (2004). Palliative Care for People with Disabilities. In J. Berzoff & J. Silverman (Eds.), Living with Dying, 499-507. New York: Columbia University Press.
Sterns, H.L., Kennedy, E.A., Sed, C. (2000). Person-centered planning for later life: A curriculum on death and dying for adults with mental retardation. Chicago: RRTC Clearinghouse on Aging and Developmental Disabilities. Order at: www.uic.edu/orgs/rrtcamr/pubslist.html
Tuffrey-Wijne, I. (1997). Palliative care and learning disabilities: The particular palliative care needs of people with learning disabilities are being overlooked. Nursing Times, 93: 50-51.
Tuffrey-Wijne, I. (2003). The palliative care needs of people with intellectual disabilities: A literature review. Palliative Medicine, 17: 55-62.
Tuffrey-Wijne, I. (2004). Longer lives mean clients must be eased through longer deaths: 2004-10. Learning Disability Practice, 7/8: 7.

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Grief and Bereavement

Carder, M. (1987). Journey into understanding mentally retarded people’s experiences around death. Journal of Pastoral Care, 41: 18-3l.
Deutsch, H. (1985). Grief counseling with the mentally retarded clients. Psychiatric Aspects of Mental Retardation Review, 4/5: 17-20.
Emerson, P. (1977). Covert grief reactions in mentally retarded clients. Mental Retardation, 15/6 : 46-47.
Fauri, D., & Grimes, D. (1994). Bereavement services for families and peers of deceased residents of psychiatric institutions. Social Work, 39: 185-190.
Harper, D.C., & Wadsworth, J. S. (1993). Grief in adults with mental retardation: Preliminary findings. Research in Developmental Disabilities, 14: 313-330.
Hedger, C., & Smith, M. J. D. (1993). Death education for older adults with developmental disabilities. Activities, Adaptation and Aging, 18: 29-36.
Hollins, S. (1995). Managing grief better: People with developmental disabilities. Habilitative Mental Healthcare Newsletter 14/3.
Kauffman, J. (1994). Mourning and mental retardation. Death Studies, 18: 257-271.
Kloeppel, D., & Hollins, S. (1989). Double handicap: Mental retardation and death in the family. Death Studies, 13: 31-38.
Lavin, C. (1989). Disenfranchised grief and the developmentally disabled. In K. Doka (Ed.). Disenfranchised grief: Recognizing hidden sorrow, 229-237. Lexington, MA: Lexington.
Luchterhand, C. (l998). Mental retardation and grief following a death loss: Information for families and other caregivers. Arlington, TX: The Arc.
Luchterhand, C., & Murphy, N. (1998). Helping adults with mental retardation grieve a death loss. Philadelphia, PA: Taylor & Francis.
Ludlow, B. (1999). Life after loss: Legal, ethical, and practical issues. In S. Herr & G. Weber (Eds.), Aging, rights, and quality of life: Prospects for older people with developmental disabilities, 189-221. Baltimore: Paul H. Brookes.
Murray, G. C., McKenzie, K., Quigley, A. (2000). An examination of the knowledge and understanding of health and social care staff about the grieving process in individuals with a learning disability. Journal of Learning Disabilities 4/1: 77-90.
Raji, O., & Hollins, S. (2003). How far are people with learning disabilities involved with funeral rights? British Journal of Learning Disabilities, 31: 42-45.
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, 330-351. Philadelphia, PA: Taylor and Francis.
Stoddard, K. P., Burke, L., & Temple, V. (2002). Outcome evaluation of bereavement groups for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15: 28-35.
Summers, S. J., & Witts, P. (2003). Psychological intervention for people with learning disabilities who have experienced bereavement: A case study illustration. British Journal of Learning Disabilities, 31: 37-41.
Wadsworth, J., & Harper, D. (1991). Grief and bereavement in mental retardation: A need for a new understanding. Death Studies, 15: 281-292.
Yanok, J., & Beifus, J. (1993). Communicating about loss and mourning: Death education for individuals with mental retardation. Mental Retardation, 31: 144-147.

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Developmental Disabilities—Aging, Healthcare, and Miscellany

American Association of Mental Retardation. (October 1998). Mortality, 345-422 (Special Issue) Mental Retardation, 36/5. historical perspective on, 237-239(37)
Botsford, A., & Rule, D. (2004). Evaluation of a group intervention to assist aging parents with permanency planning for an adult offspring with an intellectual disability. Social Work, 49/3: 423-432.
Braddock, D. (2002). Disability at the dawn of the 21st Century and the state of the states. Washington, D.C.: American Association on Mental Retardation.
Braddock, D (1999). Aging and developmental disabilities: Demographic and policy issues affecting American families. Mental Retardation, 37/2: 1555-161.
Edgerton, R. B. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley: University of California Press.
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, 427-447. Baltimore: MD: Paul H. Brookes.
Gritzer, G., & Arluke, A. (1985). The making of rehabilitation: A political economy of medical specialization, 1890-1980. Berkeley: University of California Press.
Groce, N.E. (1997). Women with disabilities in the developing world: Arenas for policy revision and programmatic change. Journal of Disability Policy Studies, 8: 177-93.
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 at http://www.kff.org/medicare/121203package.cfm and in a recent online edition of Health Affairs, available as Uncovering the health challenges facing people with disabilities: The role of health insurance, available at: http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.552v1.pdf.
Herr, S. & Weber, G. (Eds.), Aging, rights, and quality of life: Prospects for older people with developmental disabilities, 189-221. Baltimore: Paul H. Brookes.
Janicki, M., and Ansello, E. (Eds.). (2000). Community supports for aging adults with lifelong disabilities. Baltimore, MD: Paul H. Brookes.
Janicki, M., & Wisiewski, H. (Eds.). (1985). Aging and developmental disabilities: Issues and approaches. Baltimore, MD: Paul H. Brookes.
Kennedy, J. (2002). Disability and aging—beyond the crisis rhetoric: Introduction to the special issue. Journal on Disability Policy Studies, 12/4: 226-228.
Luckasson, R., Barthwick-Duffy, W, Coulter, D. L., Craig, E., Reeve, A, Schalock, R. L., Snell, M. E., Speat, S, Spitalnik, D. M., & Tasse, M. (2002). Mental retardation: Definition, classification, and systems of supports. Washington, DC: American Association on Mental Retardation.
National Institute on Disability and Rehabilitation Research. (2003). Changing concepts of health and disability: State of the science conference and policy forum.
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.
Nerney, T. (2000). Challenging incompetence (1-3): The meaning of self-determination. Ann Arbor, MI: The Center for Self Determination.
Pearlman, R. A. (August 1996). Challenges facing physicians and healthcare institutions caring for patients with mental incapacity. Journal of the American Geriatrics Society, 44/8: 986-7.
Braddock, D., Hemp, R., Rizzolo, M.C., Coulter, D., Haffner, L. & Thompson, M. (2005). The State of the States in Developmental Disabilities: 2005. Washington, DC: American Association on Mental Retardation. Available at http://www.aamr.org/Reading_Room/pdf/SOS2005.pdf
Scheer, J., Kroll, T., Neri, M., & Beatty, P. (2003). Access barriers for persons with disabilities: The consumers’ perspective. Journal of Disability Policy Studies, 13/4: 221-230.
Silverman, W., Zigman, W., Kim, H., Krinsky-McHale, S., & Wisniewski, H. (1998). Aging and dementia among adults with mental retardation and Down syndrome. Topics in Geriatric Rehabilitation, 13: 49-64.
Wittenburg, D. (September 2004). A health-conscious safety net? Health problems and program use among low-income adults with disabilities. New Federalism: National Survey of America’s Families Series B: B-62. Washington, DC: The Urban Institute.

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Advance Planning and Healthcare Decision Making

Cox, R.., & Parkman, C. (March/April 2002). The end-of-life movement: Advance care planning. Continuing Care, 20-30.
Day, L. J. (April 2000). Decision making by surrogates. Critical Care Nurse, 20/2: 107-11.
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.
Kapp, M. B. (1990). Evaluating decisionmaking capacity in the elderly: A review of recent literature. Journal of Elder Abuse and Neglect, 2/3-4: 15-29.
Kapp, M. B. (1991). Health care decision making by the elderly: I get by with a little help from my family. Gerontologist, 31: 619-623.
Keywood, K., Fovargue, S., & Flynn, M. (1999). Best practice? Health care decisionmaking by, with and for adults with learning disabilities. Manchester, UK: National Development Team.
McKnight, D. K., & Bellis, M. (1992). Foregoing life-sustaining treatment for adult, developmentally disabled public wards: A proposed statute. American Journal of Law and Medicine, 18/3: 203-32.
Midwest Bioethics Center. (Fall 1996). Health care treatment decision-making guidelines for adults with developmental disabilities. Bioethics Forum, S/1-8.
Midwest Bioethics Center. (Undated). 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. Kansas City, MO: Midwest Bioethics Center.
Robert Wood Johnson Foundation. (2001). Grant results brief: National leadership summit on self-determination, consumer direction and consumer control among people with disabilities. Available at: http://www.rwjf.org.
Volicer, L., et al. (2002). Advance care planning by proxy for residents of long-terms care facilities who lack decision-making capacity. Journal of the American Geriatrics Society, 50/4: 761-7.

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End-of-Life Care — General

Beltran, J. E. (Fall 1996). Shared decision making: Ethics of caring and best respect. Bioethics Forum, 17-25.
Bradley, E., Walker L., Blechner, B., & Wetle, T. (1997). Assessing capacity to participate in discussions of advance directives in nursing homes: Findings from the study of the Patient Self-Determination Act. Journal of the American Geriatrics Society, 45: 79-83.
Field, M. J., & Cassel, C. K. (Eds.) (1997). Approaching death: Improving care at the end of life. Washington, D.C.: National Academy Press.
Martin, D., Emmanuel, L., & Singer, P. (2000) Planning for the end of life. Lancet, 356: 1672-1686.

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Websites

American Academy of Developmental Medicine and Dentistry (AADMD) is an organization of physicians, dentists, students, and advisory members, whose collective mission is to work together, as clinicians, educators and advocates, utilizing our respective expertise and talents, to improve the overall health of children and adults with developmental disabilities, www.aadmd.org .
American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy. www.aahpm.org.
American Association on Mental Retardation (AAMR) promotes progressive policies, sound research, and universal human rights for people with intellectual disabilities, www.aamr.org.
American Association of People with Disabilities is the largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, www.aapd-dc.org.
The Arc of the United States works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community, www.thearc.org.
Center for Practical Bioethics is a freestanding practical bioethics center. Our vision: A society in which the dignity and health of all people is advanced through ethical discourse and action. Our mission: To raise and respond to ethical issues in health and healthcare. Our core value: Respect for human dignity. We believe that all persons have intrinsic worth, and we express this belief by promoting both autonomy and social justice in health and healthcare.
Center for Self-Determination is not a place. It is a highly interactive working collaborative of individuals and organizations committed to the principles of self-determination. The purpose of the collaborative is to change the nature of the support and service system for individuals with disabilities, using the principles of self-determination to help all persons create the lives they want, connected to and with their communities, www.self-determination.com.
Exceptional Parent Magazine provides information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them, www.eparent.com.
Last Passages is a Project of National Significance funded by the Administration on Developmental Disabilities and the Project on Death in America, www.albany.edu/aging/lastpassages/ and www.uic.edu/orgs/rrtcamr/highlighted.htm#end_of_life_care.
National Alliance of Direct Support Professionals. The NADSP is a coalition of organizations and individuals committed to strengthening the quality of human service support by strengthening the direct support workforce. The group has representatives from the fields of mental health, developmental disabilities, child welfare, education, and many others in the human services community. The Alliance has developed a national agenda to address conditions chronicled for 25 years that are harmful to people who rely on human services. These conditions include high staff turnover, low social status, insufficient training, limited educational and career opportunities, and poor wages. These undermine the commitment of the Direct Support Professionals, and have made it very difficult to recruit and train qualified and committed individuals in direct support roles in every area of human services, www.NADSP.org.
National Hospice and Palliative Care Organization (NHPCO)’s Vision: A world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer. NHPCO’s Mission is to lead and mobilize social change for improved care at the end of life. www.nhpco.org.
National Institutes of Health State-of-the-Science Conference on Improving End-of-Life Care, December 6-8, 2004, http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm.
Not Dead Yet is a national disability rights group that leads the disability community's opposition to legalization of assisted suicide and euthanasia. Founded in 1996, Not Dead Yet's mission has expanded to leading opposition to other forms of legalized medical killing. They oppose efforts to expand the definition of "terminal" and to easing restrictions and safeguards on surrogate decision-making regarding the withholding of food, water, and medical treatment, www.notdeadyet.org.
NYSARC, Inc., the largest not-for-profit organization serving individuals with mental retardation and other developmental disabilities and their families. NYSARC has a rich history of providing advocacy and services throughout New York State, www.nysarc.org.
Quality Mall, a website where you can find lots of free information about person-centered supports for people with developmental disabilities. Each of the “mall stores” has departments you can look through to learn about positive practices that help people with developmental disabilities live, work and participate in our communities and improve the quality of their supports, www.qualitymall.org.
Rehabilitation Research and Training Center on Aging and Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago. The RRTCADD promotes the successful aging of adults with intellectual (mental retardation) and developmental disabilities (I/DD) in response to physical, cognitive, and environmental changes. Its coordinated research, training, and dissemination activities promote progressive policies and supports to maintain health and function, self-determination, independence, and active engagement in life. The RRTCADD is a national resource for researchers, people with intellectual and developmental disabilities, their families, service providers, policy makers, advocacy groups, students, and the general community. The RRTCADD is committed to Participatory Action Research. Its active consumer and family advisors and its national advisory board of major disability, aging, and advocacy organizations help insure that the RRTCADD’s research is relevant and is responsive to culturally diverse populations, www.uic.edu/orgs/rrtcamr.
State of the States in Developmental Disabilities Project, University of Colorado, established in 1982 to investigate the determinants of public spending for mental retardation/developmental disabilities (MR/DD) services in the United States, the project maintains a 26-year longitudinal record of revenue, spending, and programmatic trends in the 50 states, the District of Columbia, and the United States as a whole. Analysis of the rich detail of the data base reveals the impact over time of federal and state fiscal policy, and illustrates important service delivery trends in the states in community living, public and private residential institutions, family support, supported employment, supported living, Medicaid Waivers, demographics, and related areas. These financial and programmatic trends are presented in The State of the States in Developmental Disabilities: 2004, by Mary C. Rizzolo, Richard Hemp, David Braddock, and Amy Pomeranz-Essley, www.cu.edu/ColemanInstitute/stateofthestates.
TASH: Equity, Opportunity and Inclusion for People with Disabilities since 1975, is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm, www.tash.org.