About Last Passages

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Last Passages is a Project of National Significance funded by the Administration on Developmental Disabilities and the Project on Death in America.

Persons with developmental disabilities have attained life expectancies consistent with the general population, and end-of-life care are now emerging health care issues. Death is not a simple matter, especially for persons with developmental disabilities and their families; agencies healthcare providers, advocates and family have identified a need for information, training, and support. In 1998 a number of public and private organizations in New York joined together and developed a New York model of end-of-life care, and produced a handbook, supporting resource manual, and training seminar. While the publications are available upon request, training has been limited to New York State.

This project will rapidly deploy the successful New York model, promoting quality end-of-life care for persons with intellectual disabilities nation-wide. The three-year project will include planning, demonstration, and dissemination phases. It will document current end-of-life care programs in each state, replicate and adapt the New York Training Model in an Oklahoma demonstration, and disseminate the model through a website, networking, and a national conference. A collaboration of organizations, including New York State ARC, New York State Office of Mental Retardation and Developmental Disabilities, Marist College, State University of New York at Albany, and Volunteers of America are undertaking this project. Volunteers of America, a national non-profit organization, serves as the lead agency.

More Information

For more information, please contact:

Angela King, Director of Program Development
Volunteers of America
National Office
1660 Duke Street
Alexandria, VA 22314-3421
Toll Free: (800) 899-0089


Text taken from the Last Passages brochure, published October 2004

In 2001, Volunteers of America, Inc. initiated Last Passages, a three-year national demonstration project with four goals:

  1. To establish a national baseline of the needs and care available to people with an intellectual disability and their families regarding end-of-life care;
  2. To identify and evaluate promising strategies for improving end-of-life care;
  3. To disseminate education and resources, examples of best practices, and models of innovative agency and state policies to professional and provider organizations throughout the country; and
  4. To advocate on behalf of individuals with an intellectual disability and their families for more effective and compassionate end-of-life care practices and policies at national, state, and individual agency levels.

Volunteers of America, Inc. initiated Last Passages in response to the increased longevity of people with an intellectual disability, and to the growing number living with their families, by themselves, or in individual or group housing in the community, receiving community-based healthcare and facing the challenge of obtaining quality end-of-life care within their communities. While hospice and palliative care have significantly transformed end-of-life care for the general population, people with an intellectual disability and their families have not benefited to the same extent. In addition, formal and informal caregivers for people with an intellectual disability typically lack training and access to resources for enabling dignity and quality during care at the end of life.

Partners in the Last Passages initiative include Marist College, New York State ARC, Inc., New York State Office of Mental Retardation and Developmental Disabilities, and the University at Albany.

Over the three years of the grant, Last Passages accomplished the following:

The resources developed by the Last Passages initiative continue to be available and accessible to interested individuals and providers. For more information, visit: http://www.uic.edu/orgs/rrtcamr/end_of_life/ Or contact Angela King, Volunteers of America, amking@voa.org.

For copies of the NYSARC monograph, resource manual and training resources, contact Nancy Cannon, NYSARC, Inc., cannonn@nysarc.org.

For copies of research papers, program evaluations, and reports, contact Anne Botsford, Ph.D., A.C.S.W., Marist College, anne.botsford@marist.edu.