This forum was developed as a collaborative initiative by NYSARC Inc and The Hospice and Palliative Care Association of New York State with funding provided by the NYS Developmental Disabilities Planning Council.
"Obtaining Hospice for Patients without Capacity or Guardians: The Challenges, Benefits and Restrictions of the Surrogate Decision Making Committees (SDMC) Consent Process"
Throughout this discussion we examined the case study of the first person to receive Hospice care under the 2009 law (summarized below) permitting SDMC to consent for Hospice and DNR. We discussed this and other SDMC/Hospice cases so that we could all learn from what went well and what didn't, what barriers and challenges were encountered, what successes were realized and how each of us can influence those outcomes.
This was a lively, informative conversation and because we believe that this topic is one that would really benefit from all stakeholders examining the process and their part in it, this is a thread that we will keep open so that ongoing questions and concerns can be addressed and additional resources can be posted as well…it seems we’ve just scratched the surface of this one!
Summary of 2009 Law: Effective January 3, 2009, amendments to Title 14 Part 710 of the New York State Codes, Rules and Regulations governing the Surrogate Decision Making Committee (SDMC) Program, expanded the SDMC Program jurisdiction to include hospice decisions for persons who reside in, or previously resided in, facilities licensed operated or funded by the Office for People with Developmental Disabilities (OPWDD) or the Office of Mental Health or the Office of Alcohol and Substance Abuse.
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The forum was developed in response to a series of training workshops that were organized across New York State to bring together Developmental Disabilities, Hospice and Palliative Care providers and advocates who have an interest in improving end-of-life and supportive care for persons with developmental disabilities, as well as their families and their staff caregivers.
~~ The goal is to improve end-of-life care for persons with developmental disabilities through greater utilization of hospice and palliative care services.
~~ The forum was developed to provide a safe and accessible platform that would encourage a learning dialog to take place between the develpmental disabilities and the hopsoce/palliative care service provider communitites and advocates.
~~The forum features a professionally facilitiated discussion board where registered members are able to post questions and concerns and then recieve answers from experts and/or their peers.
~~ Forum members recieve quarterly E-Newsletters that provide up to date news, policy information and advocacy opportunities as well as educations resources, practical materials and a current events calendar centering on Hospice, Palliative care and Developmental Disablities issues.
We believe that every person who cares for, or advocates for persons with developmental disabilities has knowledge, ideas and experiences to share, and that together this can be a thriving community with ideas to improve end-of-life and supportive care for persons with developmental disabilitites and those who are close to them.
Logon today and you can review previous topics in the list below ~ just go to 'Forum Home' where you will find the previous discussion threads. Here you will also find useful resources gathered during the course of these discussions and the research for the quarterly newsletter.
Please do come back and see what is coming in 2012!
Use the following links to find additional information on hospice and palliative care and on additional educational opportunities offered by NYSARC Inc and the Hospice and Palliative Care Association of New York State