The 131st Annual Meeting (November 15-19, 2003) of APHA

Abstract #55426

Gary L. Stein, JD, MSW, New Jersey Health Decisions, 13 Rockland Terrace, Verona, NJ 07044, 973-857-5552, HealthDec@aol.com

People with disabilities and chronic illnesses and their families need informed, committed, and compassionate individuals to assist them in navigating difficult health care issues, particularly near the end of life. These concerns have become more significant as greater numbers of individuals with developmental disabilities become elderly and require specialized services. Supported by the Healthcare Foundation of New Jersey and the Soros Foundation Network — Project on Death in America, the Project on Health Decisions for People with Disabilities is a model program to serve a community often-neglected in the dialogue on palliative care and health care planning. (1) We conduct a Disability Ethics Network to offer community-based case consultation services for individuals with disabilities (especially those who reside in state developmental centers and community facilities), their families and surrogates, and professional and administrative staff. Network members receive training on conflict resolution and mediation, case consultation, and palliative care. (2) We provide educational programs for professional staff and consumers on issues related to health care decision-making, advance directives and health care planning, end-of-life care, and hospice and palliative care. (3) We are developing service, training, and policy guidelines for the provision of hospice and palliative care for people with developmental disabilities. This project provides a new voice for individuals with disabilities and their family members and surrogates, and creates models for replication to assist them in making complex and difficult health care choices.

Learning Objectives:

(
• Provide background on the unique health care decision-making and end-of-life care issues facing people with disabilities and their surrogates; (
• Describe the service and policy issues encountered in developing hospice and palliative care services for people with developmental disabilities; (
• Describe a model project, including a community-based ethics consultation service, to promote palliative care and effective health care decision-making for people with disabilities for replication by other providers.

Keywords: Disability, End-of-Life Care

Related Web page: www.NJComfortCare.org

Presenting author's disclosure statement:
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: Affiliated with New Jersey Health Decisions, where I am executive director. There is no financial interest/arrangement other than employment.