The goal of the Office of Disability is to increase access to hospice and palliative care for individuals with developmental disabilities and their loved ones, building on the work of the Last Passages project.

Leaders in the fields of developmental disabilities, developmental health and social services, and hospice and palliative care are working to develop education resources to support hospice/palliative care professionals and paraprofessionals address the needs of individuals with DD and their families and their communities.

• The Need
• Last Passages 
  • Editor's Desk: Last Passages 
• Advisory Board

AAMR/RRTC Conference, December 2005

• Last Passages
• NHPCO/Office of Disability
• The Palliative Care Approach to End of Life Care
• Future of Healthcare and End-of-Life 

Current/Ongoing Projects

• California 
  • Palliative Care and End of Life Training Project: UCLA School of Nursing & California Department of Developmental Services
• Massachusetts
  • A Collaborative Program on End of Life Care
• New Jersey
  • New Jersey Health Decisions  
• New York
  • NYSARC and the Last Passages End-of-Life Project

Upcoming Events

• Understanding Developmental Disabilities and End-of-Life Issues
• Improving Access to Hospice and Palliative Care for People with Developmental Disabilities and Their Families
• NHPCO's 5th Conference on Volunteerism and Family Caregiving
• NHPCO's 22nd Management and Leadership Conference

Resources

• Articles and Statements
  • Last Passages Policy Paper  
  • Promoting Palliative Care for People with Disabilities, by Gary Stein 
  • End-of-Life Care has Improved for the Developmentally Disabled, by Sterling Rouse 
  • Last Passages Becomes NHPCO's Office of Disability, NewsLine 
  • 2003 Last Passages Survey Results 
  • Exceptional Parent Magazine, End-of-Life series is available at www.eparent.com.
    • End of Life Planning: Parenting a Child with an Intellectual Disability
      Geraldine Abbatiello; The Exceptional Parent; Nov 2005; Vol 35, Iss 11; pg 33, 3.
    • History of End-of-Life Care for People with Disabilities
      Patricia E. Cavanaugh; The Exceptional Parent; Mar 2005; Vol 35, Iss 3; pg 61, 4.
    • At Home: Care Options at the End of Life
      Patricia E. Cavanaugh; The Exceptional Parent; Dec 2004; Vol 34, Iss 12; pg 46, 3.
    • Person Centered Planning in the Communication of End-of-Life Wishes
      Leigh Ann Kingsbury; The Exceptional Parent; Nov 2004; Vol. 34, Iss 11; pg 44, 3.
  • A Statement of Common Principles of Life-Sustaining Care and Treatment of People with Disabilities 
  • Dimensions of Faith and Congregational Ministries for Persons with Developmental Disabilities and their Families: A Bibliography and Address Listing for Clery, Laypersons, Families, and Service Providers. The Boggs Center of Developmental Disabilities
  • Table of Contents: End-of-Life Care: Bridging Disability and Aging with Person-Centered Planning 
  • Preface: End of Life, Religion, Disability, and Health: Where All the Paths Converge, by William C. Gaventa & David L. Coulter, Co-Editors
  • Dying Retarded, by Rick Rader, MD, Neurodevelopmental Disabilities, Orange Grove Habilitation Center
  • RRTC on Aging and Developmental Disbilities Newsletter
• Updated Bibliography
  • Last Passages Updated Bibliography  

Links

Click here for a list of links.

For more information contact Liz Craig at lcraig@nhpco.org.