Members of NYSARC's Self-Advocacy Advisory Committee Accepting the Award from DDPC

For the past 10 years, NYSARC has engaged with many professionals and organizations to provide the field with good and accurate information regarding end-of-life issues for people who have developmental disabilities.  Many of the efforts centered on supporting families and service providers preparing to meet the needs of an aging population. Topics covered in training included advanced planning, health care proxies, hospice, and dealing with grief and loss.  The projects, largely funded by the New York State Developmental Planning Council (DDPC), have covered these topics with an aim to support caregivers, clinicians, and administrators and to build cross-systems collaborations between the developmental disability and hospice and palliative care fields.

In 2010, with Hospice and Palliative Care of New York State and Self-Advocacy Association of New York State as partners, NYSARC received a grant from DDPC to modify the training materials created for previous end-of-life care projects to make it meaningful for self-advocates.  The NYSARC Self-Advocacy Advisory Committee did an outstanding job of selecting the material to be included in the training, designing training events and even creating a skit as an alternate method to the traditional training style.

The End-of-Life Decision Making for Self-Advocates training has reached over 300 people across the State.  Presented primarily by and for people who have developmental disabilities, this training offers a unique approach to giving information and encouraging participation in end-of-life planning including how to contemplate, discuss, and make wishes known in a simplified advance directive, understanding hospice and palliative care, and dealing with loss and grief.

In celebration of achievements in the area of empowering self-advocates in end-of-life decision making, DDPC presented NYSARC with the Forging Pathways Award “to recognize and reward extraordinary quality, creativity, innovation and success in DDPC funded grants.” Several members of the Self-Advocacy Advisory Committee were on hand for the award presentation on May 31st (pictured) during the DDPC annual meeting.

NYSARC is extremely proud of the accomplishments of the Self-Advocacy Advisory Committee and their positive influence on understanding end-of-life decision making.

In partnership with the Self- Advocacy Association of New York State and the Hospice and Palliative Care Association of New York State, NYSARC will provide several opportunities for self-advocates, together with the people who typically support their decision making to come together to explore this important topic.

Become a Trainer

In order to reach people across the State, we are seeking self-advocates, advisers, staff and volunteers to become trainers on the End-of-Life Decision Making for Self-Advocates curriculum. As a trainer, you will be asked to offer at least one workshop in your area. There is no cost to attend and lunch will be provided. Self-advocates who become trainers will receive a stipend.

Register Now

Download the registration Form

Monday September 12, 2011
10am-2pm

Normanside Country Club
150 Salisbury Road
Delmar, NY 12054