The following is excerpted from Exceptional Parent Magazine, 2004

“Not every agency, circle of support, cadre of direct support professionals and state has fostered an appreciation, culture, competency and affinity for thinking about end-of-life issues. Unfortunately, “death” in the community often relates to death reviews, incident reports, empty beds and—too often—a plethora of decisions made by emergency response teams or, worse, by the “home office.” With this in mind, there has been a fulgent cascade of activity and advocacy from several epicenters of enlightenment that are now converging on the national scene. And so we are adding the realm of “how we died” to the lexicon of developmental disabilities as an indicator of “how we lived.”

The core piece of the new thinking came in the form of a monograph prepared under the leadership of Dr. Anne L. Botsford and Dr. Lawrence T. Force. Support for the creation of “End-of-life Care: A Guide for Supporting Older People with Intellectual Disabilities and Their Families” was provided by New York State ARC (NYSARC, Inc), Marist College and the New York State Office of Mental Retardation and Developmental Disabilities. The publication and distribution were developed in concert with a comprehensive education program (you can’t learn living or dying from a softbound guide) that was introduced statewide in 2000. Following its success in New York State, the program was given both its wings and its marching orders in the form of a grant obtained by the Volunteers of America. The program became Last Passages.

Last Passages, a national demonstration project, was designed to help transform death and dying from a “critical incident” to the natural end of the life cycle for persons with intellectual and developmental disabilities and their families. It was supported by grants from the Administration for Children and Families of the US Department of Health and Human Services and the Project on Death in America of the Open Society Institute. Angela King, Director of Program Development of Volunteers of America, is the project director for Last Passages. Angela brought both her soul as an advocate and her deep beliefs to bear in affording every possible opportunity to citizens with special needs. 

The New York model was replicated in Oklahoma this past April, and a cadre of “Last Passages trainers” from across the country became certified to promote and teach the program in their states. A national advisory board was set up to fine-tune the program and make it applicable in other states (programs need to be tailored to meet existing state laws) and for other populations (e.g., children with disabilities, ethnic populations, unique cultures). Of critical concern to the advisory group was gaining insight into the distinct local frameworks and cultures that would either embrace or object to this new program.

The national board is quick to point out that Last Passages is not an inflexible template—the last thing any community needs—but a guide to how these critical questions may be addressed. There are certainly bodies of naysayers (including physicians, administrators and even parents) who argue about the wisdom of ascertaining “end-of-life” wishes from individuals who cannot comprehend the idea of “end of the week.” Last Passages is a program that needs, first, to be fully understood, then needs realistic goals and outcomes, then to be cultivated in a culture that fully recognizes, celebrates and supports the special needs of individuals. It most certainly needs believers and champions.

Rick Rader, M.D., Editor-in-Chief
Director, Morton J. Kent Habilitation Center
Orange Grove Center, Chattanooga, TN