Rev. Bill Gaventa on end-of-life resources for the developmentally disabled

End of Life Care: Bridging Disability and Aging with
Person Centered Care

This is the title of a new, small book that comes out of the Journal of Religion, Disability, and Health from Haworth Press. (With the Journal, we are able to publish a focused or thematic issue or double issue, and also have it published as a book.) This volume is a particularly interesting collection of articles which came together in a fascinating way, but it is also a reflection of some wider focus and attention to issues of death, loss, and grief in adults with developmental disabilities and their families/caregivers.

The genesis of this particular collection came when we received two articles, one by Rudd Turnbull, Co-Director of The Beach Center on Disability in Lawrence, Kansas, and one of the premier lawyers in the field of developmental disabilities. He is a parent, and writes the lead article, “What Should We Do for Jay: The Edges of Life and Cognitive Disability” on policy and practice issues that would impact his son Jay and those who are caring for Jay when he reaches the end of his life. The second article was from Mary Jo Iozzio, a Catholic theologian at Barry College in Florida. Entitled “The Writing on the Wall…Alzheimer’s Disease: A Daughter’s Look at Mom’s Faithful Care of Dad,” she writes about the theological themes she saw in the care of her father by her mother. The fascinating point to me was that both authors, from very different perspectives, reached common kinds of recommendations and conclusions. What’s more, the reviews from our review process were so interesting we decided to publish the reviews/responses to these two articles as a way of sharing the conversation.

Around the same time, the Last Passages Project was finishing its work – a project to develop policies, resources, and materials to support people with developmental disabilities at the end of their lives. This volume includes its philosophy and policy recommendations for service systems and caregivers, and an excellent bibliography of resources. You can find this information at: http://www.albany.edu/aging/lastpassages/

Finally, in the area of developmental disabilities, the emerging practices of person centered planning are also impacting end of life care. Person centered planning processes are shaped around an individual and those closest to them, focused on strengths and wants as well as needs, and provide a way to thoughtfully blend informal and formal supports. Leigh Ann Kingsbury’s article on the use of person centered planning in a project in Washington, D.C. stands by itself, but also points to the ways that these kinds of planning processes can be used to support both people with disabilities and those who are aging at the end of life.

This is one of the first collections to bridge disability and aging issues. The good news is that there are a number of new and good resources related to end of life issues for adults with developmental disabilities. The AAMR sponsored a first national forum on this issue in early December in Washington, D.C. where I had the privilege of being the final keynoter. There were over 150 participants, all reflecting a trend in which service providers are beginning to recognize that people with developmental disabilities are living much longer, but also, like everyone, facing issues of aging, loss, grief, and death. Some of the papers and presentation notes can be seen at: http://www.aamr.org/Events/aging.shtml

End of Life Care: Bridging Disability and Aging with Person Centered Care can be found at: http://www.haworthpress.com/store/product.asp?sid=GKTXR4TVTEDE8GPKAX1CXXKA46FG1QJ6&sku=5712&AuthType=4

Some good resources include:

• End-of-life Care: A Guide for Supporting Older People with Intellectual Disabilities and their Families. By A.L. Botsford and L.T. Force. Purchase price: $21. From NYSArc, Inc, 393 Delaware Ave., Delmar, NY 12054. Phone: 518-439-1893. Email: nysarc@crisny.org.

• When Somebody Dies. S.Hollins, S. Dowling, & N. Blackman. London, Books Beyond Words, Gaskell/St. George’s Hospital Medical School, 2003. Price $20. From Balogh International, 191 N. Duncan Road, Champaign, IL 61822. Phone: 217-355-9331. Other titles in the Books Beyond Words series include When Mum Died and When Dad Died.

• Person-centered Planning for Late Life: A Curriculum for Adults with Mental Retardation. By H.L. Stern, E.A. Kennedy, C.M. Sed, & T. Heller. Institute for Life Span Development and Gerontology, University of Akron. Rehabilitation Research and Training Center on Aging with Mental Retardation, The University of Illinois. Price $25. From RRTC Clearinghouse on Aging and Developmental Disabilities, Institute on Disability Human Development, 1640 West Roosevelt Road M/C 626, Chicago, IL 60608-6904. Web order: www.uic.edu/orgs/rrtcamr/pubslist.html.

• Lessons in Grief and Death: Supporting People with Developmental Disabilities in the Healing Process. By Linda Van Dyke, this book includes counseling techniques and activities, including music, art, and drama, to work through the grieving process. Available from High Tide Press, 2505 E. Washington, Joliet, IL 60433. Order toll free at 1-800-469-9461 or visit www.hightidepress.com.

• Helping Adults with Mental Retardation Grieve a Death Loss. Charlene Lucterhand, Nancy Murphy. Taylor and Francis Group, 7625 Empire Drive, Florence, KY 41042. 1-800-634-7064. $22.95. An abbreviated form of this book is a booklet, Mental Retardation and Grief Following a Death Loss: Information for Families and Other Caregivers. 45 pp. $6.49. Available from The Arc. www.TheArcPub.com.

Other titles in the series of books coming from the Journal of Religion, Disability, and Health include:

The Theological Voice of Wolf Wolfensberger. Ed. by Bill Gaventa and David Coulter. Collection of Wolfensberger’s essays on theology and disabilities, with three responders, and a response by Wolf Wolfensberger.

The Pastoral Voice of Robert Perske. Ed. by Bill Gaventa and David Coulter. A collection of the Robert Perske’s essays from the 1960’s, when he was a chaplain at the Kansas Neurological Institute. Essays include some of the first written materials on theology and ministries with people with mental retardation. Responders include Steve Eidelman, Executive Director of The Arc, Quincy Abbot, former Arc President and parent, and Robert Voorhees.

Spirituality and Intellectual Disability. International Perspectives on the Effect of Culture and Religion on Healing Body, Mind, and Soul. Ed. Bill Gaventa and David Coulter. Collection of papers from the first Disability and Spirituality strand at the IASSID 2000 Conference in Seattle. Includes theoretical papers, research, practice, and perspectives from a variety of religious viewpoints.

Graduate Theological Education and the Human Experience of Disability. Ed. Robert Anderson. Volume focused on strategies for inclusion of issues related to disability in seminaries and theological education. Forthcoming in another issue, a volume focused on Jewish theological education and disability.

Not in book form but available. "Disability in Asian Culture and Beliefs: History and Service Development." Journal of Religion, Disability, and Health. Volume 6, No. 2/3. Ed. Bill Gaventa and David Coulter. A collection of the papers of M. Miles, with responses by C. Miles, Pramila Balasundaram, and MJ and Maya Thomas.

Outback to Outfront: Voices in Disability and Spirituality from the Land Down Under. Ed. Christopher Newell and Andrew Calder. Collection of essays from scholars, practioners, and othes in Australia.

Critical Reflections on Stanley Hauerwas’ Theology of Disability: Disabling Society, Enabling Theology Ed. John Swinton. A collection of theologian/ethicist Stanley Hauerwas’ essays on theology and intellectual disability, with responses by Jean Vanier, Michael Berube, John O’Brien, Jeff McNair, Aileen Barclay, Arthur McGill, Ray Anderson, Christopher Newell, Hazel Morgan, and Linda Treloar.

Do you have thoughts about education & research you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.