http://www.ddhospiceandpalliativecare.org/mybb/ Mon, 21 May 2012 04:32:14 +0000 MyBB http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=130 Wed, 16 May 2012 17:47:15 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=130 New England Journal of Medicine (NEJM) article, ‘End-of-Life Transitions among Nursing Home Residents with Cognitive Issues’ examines the patterns of health care transitions for persons with advanced cognitive and functional impairment who were nursing home residents four months before death. For persons with advanced cognitive impairment, nursing homes are the predominant site of care. Authors defined patterns of transition as “burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life.” Authors also examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life and hospice enrollment in the last 3 days of life.]]> New England Journal of Medicine (NEJM) article, ‘End-of-Life Transitions among Nursing Home Residents with Cognitive Issues’ examines the patterns of health care transitions for persons with advanced cognitive and functional impairment who were nursing home residents four months before death. For persons with advanced cognitive impairment, nursing homes are the predominant site of care. Authors defined patterns of transition as “burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life.” Authors also examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life and hospice enrollment in the last 3 days of life.]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=129 Wed, 14 Mar 2012 00:08:22 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=129
Any support you can be would be greatly appreciated!]]>
Any support you can be would be greatly appreciated!]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=128 Wed, 22 Feb 2012 20:13:27 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=128 American Journal on Intellectual and Developmental Disabilities entitled, ‘Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities’ This article examines identified factors related to future caregiving expectations for the siblings of persons with an intellectual or developmental disability from the perspective of their parents and themselves.

  Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities.pdf (Size: 151.41 KB / Downloads: 1) ]]> American Journal on Intellectual and Developmental Disabilities entitled, ‘Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities’ This article examines identified factors related to future caregiving expectations for the siblings of persons with an intellectual or developmental disability from the perspective of their parents and themselves.

  Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities.pdf (Size: 151.41 KB / Downloads: 1) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=127 Tue, 15 Nov 2011 19:51:19 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=127 “Palliative Care for Patients with Down Syndrome” The article discusses the natural history of Down syndrome and issues specific to palliative and end-of-life care for patients with Down syndrome.

  Palliative Care for Persons with Down Syndrome.pdf (Size: 1.05 MB / Downloads: 5) ]]> “Palliative Care for Patients with Down Syndrome” The article discusses the natural history of Down syndrome and issues specific to palliative and end-of-life care for patients with Down syndrome.

  Palliative Care for Persons with Down Syndrome.pdf (Size: 1.05 MB / Downloads: 5) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=126 Thu, 11 Aug 2011 17:16:08 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=126 “Does This Patient Have Medical Decision-Making Capacity?”
This article reports on a study of the prevalence of incapacitated patients and the accuracy of the assessment of incapacity in patients. The authors of the JAMA article evaluated nine instruments for assessing incapacity, and found three useful: the Aid to Capacity Evaluation, the Hopkins Competency Assessment Test, and the Understanding Treatment Disclosure. It also found that the Mini-Mental State Examination, which is not designed to assess capacity, was “useful only at extreme scores.” The abstract concludes, “Incapacity is common and often not recognized. The MMSE is useful only at extreme scores. The ACE is the best available instrument to assist physicians in making assessments of medical decision-making capacity.”

  Does this Patient have Medical Decision-Making Capacity.pdf (Size: 778.9 KB / Downloads: 5) ]]> “Does This Patient Have Medical Decision-Making Capacity?”
This article reports on a study of the prevalence of incapacitated patients and the accuracy of the assessment of incapacity in patients. The authors of the JAMA article evaluated nine instruments for assessing incapacity, and found three useful: the Aid to Capacity Evaluation, the Hopkins Competency Assessment Test, and the Understanding Treatment Disclosure. It also found that the Mini-Mental State Examination, which is not designed to assess capacity, was “useful only at extreme scores.” The abstract concludes, “Incapacity is common and often not recognized. The MMSE is useful only at extreme scores. The ACE is the best available instrument to assist physicians in making assessments of medical decision-making capacity.”

  Does this Patient have Medical Decision-Making Capacity.pdf (Size: 778.9 KB / Downloads: 5) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=125 Mon, 20 Jun 2011 20:48:34 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=125 (on a demonstration basis) the use of a simplified advanced health care directive form, for exclusive use by persons with developmental disabilities, NYSARC and the NYS Department of Health have completed and released the 'NYS Simplified Advanced Directives' for use with persons with developmental disabilities.

The simplified forums include pictures to illustrate the meaning of certain difficult to grasp concepts and the use of elementary school-level language so that individuals, who might otherwise be unable to make their wishes known, can understand the health care choices available to them and to chose a health care proxy themselves. While this law became effective upon the date of approval, the simplified advanced health care directive forms have just recently been made available after a lengthly develoment and review process.

You can view and/or download the resource here -- and let us know what you think!

  New York State Simplified Advance Directives.pdf (Size: 1.14 MB / Downloads: 4) ]]> (on a demonstration basis) the use of a simplified advanced health care directive form, for exclusive use by persons with developmental disabilities, NYSARC and the NYS Department of Health have completed and released the 'NYS Simplified Advanced Directives' for use with persons with developmental disabilities.

The simplified forums include pictures to illustrate the meaning of certain difficult to grasp concepts and the use of elementary school-level language so that individuals, who might otherwise be unable to make their wishes known, can understand the health care choices available to them and to chose a health care proxy themselves. While this law became effective upon the date of approval, the simplified advanced health care directive forms have just recently been made available after a lengthly develoment and review process.

You can view and/or download the resource here -- and let us know what you think!

  New York State Simplified Advance Directives.pdf (Size: 1.14 MB / Downloads: 4) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=57 Wed, 23 Feb 2011 21:12:02 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=57 New England Journal of Medicine article detailing the benefits of early Palliative Care intervention with persons diagnosed with non-small cell lung cancer.

The findings of the recent study called, ‘Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer’ state that compared with patients receiving standard care, patients who received palliative care early after diagnosis not only experienced significant and meaningful improvements in both quality of life and mood but also received less aggressive care at the end of life and experienced longer survival times by approximately 2 months.

  NEJM Study Palliative Care Extends Life.pdf (Size: 392.49 KB / Downloads: 3) ]]> New England Journal of Medicine article detailing the benefits of early Palliative Care intervention with persons diagnosed with non-small cell lung cancer.

The findings of the recent study called, ‘Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer’ state that compared with patients receiving standard care, patients who received palliative care early after diagnosis not only experienced significant and meaningful improvements in both quality of life and mood but also received less aggressive care at the end of life and experienced longer survival times by approximately 2 months.

  NEJM Study Palliative Care Extends Life.pdf (Size: 392.49 KB / Downloads: 3) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=55 Wed, 26 Jan 2011 21:52:11 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=55 NYS OPWDD Guidelines for DNRs All persons, including those with intellectual and developmental disabilities and their guardians have the right to ensure their wishes for end-of-life care are heard and honored, but the truth is that this is often not the case. For the developmentally disabled community, one of the biggest barriers to ensuring end-of-life care choices are conflicting State laws and regulations concerning guardianship, informed consent, DNRs and related health care decisions. Yet another barrier to individual choice at end of life for the developmentally disabled community is the sheer complexity of Advance Directive forms.

NYS OMRDD created and published Guidelines on DNR Orders in July, 2007. Use the following link to access that document - this is a very useful resource as it provides a logical overview of the issues involved for the DD community. Among other things, the contents include information on:
The definition of capacity Incapacity determinations
Necesssary Qualifications
Decision making for DNR orders
Priority of surrogates for DNR

To view, download or print the document see the attachement.

  OPWDD Guidelines on Do Not Resuscitate (DNR) Orders.pdf (Size: 173.3 KB / Downloads: 8) ]]> NYS OPWDD Guidelines for DNRs All persons, including those with intellectual and developmental disabilities and their guardians have the right to ensure their wishes for end-of-life care are heard and honored, but the truth is that this is often not the case. For the developmentally disabled community, one of the biggest barriers to ensuring end-of-life care choices are conflicting State laws and regulations concerning guardianship, informed consent, DNRs and related health care decisions. Yet another barrier to individual choice at end of life for the developmentally disabled community is the sheer complexity of Advance Directive forms.

NYS OMRDD created and published Guidelines on DNR Orders in July, 2007. Use the following link to access that document - this is a very useful resource as it provides a logical overview of the issues involved for the DD community. Among other things, the contents include information on:
The definition of capacity Incapacity determinations
Necesssary Qualifications
Decision making for DNR orders
Priority of surrogates for DNR

To view, download or print the document see the attachement.

  OPWDD Guidelines on Do Not Resuscitate (DNR) Orders.pdf (Size: 173.3 KB / Downloads: 8) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=54 Wed, 26 Jan 2011 21:36:51 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=54 Effective immediately, the Office for People with Developmental Disabilities (OPWDD) and the Office of Mental Health (OMH) has approved the use of the newly revised MOLST form

The form was approved for use as a nonhospital DNR/DNI form for persons with developmental disabilities or persons with mental illness, including persons who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act. The OPWDD approved checklist MUST be attached to the MOLST form, in order for the form to be used for persons with developmental disabilities who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act.

The MOLST Checklist is attached below for your review and/or use.

  MOLST-CHECKLIST for persons with Developmental Disabilities.doc (Size: 44.5 KB / Downloads: 2) ]]> Effective immediately, the Office for People with Developmental Disabilities (OPWDD) and the Office of Mental Health (OMH) has approved the use of the newly revised MOLST form

The form was approved for use as a nonhospital DNR/DNI form for persons with developmental disabilities or persons with mental illness, including persons who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act. The OPWDD approved checklist MUST be attached to the MOLST form, in order for the form to be used for persons with developmental disabilities who are incapable of making their own health care decisions or who have a guardian of the person appointed pursuant to Article 81 of the Mental Hygiene Law or Article 17-A of the Surrogate's Court Procedure Act.

The MOLST Checklist is attached below for your review and/or use.

  MOLST-CHECKLIST for persons with Developmental Disabilities.doc (Size: 44.5 KB / Downloads: 2) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=52 Fri, 08 Oct 2010 18:29:28 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=52 "Obtaining Hospice for Patients without Capacity or Guardians: The Challenges, Benefits and Restrictions of the Surrogate Decision Making Committees (SDMC) Consent Process"

Please welcome our guest moderator for this discussion, Terry Clark, RN, CHPN from Community Hospice of Albany County. Terry has 30 years experience as a nurse; she has worked as a Hospice RN for 6 years, and prior to that she worked for 7 years as an RN Health Care Coordinator in a residential setting for Center for Disabilities Services. She began her career at Wildwood and has maintained a strong interest in improving end of life outcomes for individuals with developmental disabilities since that time.

In May of 2003 Terry began with The Community Hospice of Albany but she has continued to work with for persons with developmental disabilities disabled through case managing but also by working with the Hospice Outreach Department presenting two workshops at New Vision’s annual conferences and working the Hospice and Palliative Care Association of NYS (HPCANYS) both in facilitating on the DD Hospice Forum and participating in a Hospice 101 Training for the Surrogate Decision Making Committee members at the NYS Commission on Quality of Care and Advocacy for Persons with Disabilities.]]> "Obtaining Hospice for Patients without Capacity or Guardians: The Challenges, Benefits and Restrictions of the Surrogate Decision Making Committees (SDMC) Consent Process"

Please welcome our guest moderator for this discussion, Terry Clark, RN, CHPN from Community Hospice of Albany County. Terry has 30 years experience as a nurse; she has worked as a Hospice RN for 6 years, and prior to that she worked for 7 years as an RN Health Care Coordinator in a residential setting for Center for Disabilities Services. She began her career at Wildwood and has maintained a strong interest in improving end of life outcomes for individuals with developmental disabilities since that time.

In May of 2003 Terry began with The Community Hospice of Albany but she has continued to work with for persons with developmental disabilities disabled through case managing but also by working with the Hospice Outreach Department presenting two workshops at New Vision’s annual conferences and working the Hospice and Palliative Care Association of NYS (HPCANYS) both in facilitating on the DD Hospice Forum and participating in a Hospice 101 Training for the Surrogate Decision Making Committee members at the NYS Commission on Quality of Care and Advocacy for Persons with Disabilities.]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=48 Thu, 07 Oct 2010 19:30:21 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=48 As our upcoming forum discussion "Obtaining Hospice for Patients without Capacity or Guardians: The Challenges, Benefits and Restrictions of the Surrogate Decision Making Committees (SDMC) Consent Process," approaches we realize that these committees are somewhat of a mystery to many Hospice and Palliative Care providers. Therefore, I believe that it is important to educate our members on exactly what an SDMC is, what their structure is, how they function, what their history is, what NYS Office coordinates them and what NYS Statutes and Regulations govern them.

Following you will find a series of documents with information that will answer these questions for you...if you have any additional questions please send them to me and we will make sure to answer them!

  NYS SDMC Background.pdf (Size: 8.02 KB / Downloads: 2)

  New York State SDMC Regulations.pdf (Size: 106.85 KB / Downloads: 2)

  SDMC History & Development.pdf (Size: 281.69 KB / Downloads: 2) ]]> As our upcoming forum discussion "Obtaining Hospice for Patients without Capacity or Guardians: The Challenges, Benefits and Restrictions of the Surrogate Decision Making Committees (SDMC) Consent Process," approaches we realize that these committees are somewhat of a mystery to many Hospice and Palliative Care providers. Therefore, I believe that it is important to educate our members on exactly what an SDMC is, what their structure is, how they function, what their history is, what NYS Office coordinates them and what NYS Statutes and Regulations govern them.

Following you will find a series of documents with information that will answer these questions for you...if you have any additional questions please send them to me and we will make sure to answer them!

  NYS SDMC Background.pdf (Size: 8.02 KB / Downloads: 2)

  New York State SDMC Regulations.pdf (Size: 106.85 KB / Downloads: 2)

  SDMC History & Development.pdf (Size: 281.69 KB / Downloads: 2) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=47 Thu, 16 Sep 2010 17:07:30 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=47 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=46 Wed, 19 May 2010 21:04:48 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=46

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Before posting messages, please familiarize yourself with the forum, and use the Forums search feature to locate any prior threads that may have already answered your question. And, if you do not find the information you need, please contact a moderator or administrator.]]>

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User Levels and Groups

What are Administrators?
Administrators are people assigned the highest level of control over the entire board. These people can control all facets of boards’ operation, including setting permissions, registering and banning users, assigning moderators, etc. They also have full moderator capabilities in all the forums.

What are Moderators?
Moderators are individuals (or groups of individuals) whose job it is to look after the running of the forums from day to day. They have the power to edit or delete posts and lock, unlock, move, delete and split topics in the forum they moderate. Generally moderators are there to prevent people going off-topic or posting abusive or offensive material.


Some final words

Before posting messages, please familiarize yourself with the forum, and use the Forums search feature to locate any prior threads that may have already answered your question. And, if you do not find the information you need, please contact a moderator or administrator.]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=45 Wed, 19 May 2010 20:31:03 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=45
The term "Netiquette" refers to Internet Etiquette, which should include courteous and polite communications. The golden rule of Internet Etiquette is "Think before Posting".

General Posting Information:
Active debate, resource/information sharing, and questions related to end of life care for people with developmental disabilities are welcomed. When posting, please be courteous, objective, and respectful of the views of others. Each individual's ideas, thoughts, and impressions are unique and each as important as the next person's.

In order to facilitate productive discussions, here are some suggestions that may enrich your interactions.

1. Contribute actively and avoid reiterating - A post that says 'I agree' is okay, but consider enriching discussions by expanding on previous posts on the same topic (e.g., locating other examples or elaborating on the point).

2. Quote messages if you want to reply to them specifically.
- This can help others to follow your logic. Please exercise care with the 'Quote' from other's opinion and only quote what you need to make your point. It keeps our discussions easier for others to follow.

3. Keep messages relevant to the forum.
- Messages should contribute a topic being discussed, or introduce an idea relevant to the topic or to the mission of this forum. If you have any questions, please don't hesitate to contact the forum moderators for guidance.

4. Use a descriptive title for your posts. - This will help subsequent visitors to the Online Forum successfully identify your topic. Vague subjects such as "HELP!!" or "Urgent question!!!" may not be read by experienced users, as they provide no indication as to what your issue may be.

5. Avoid posting in all caps.
- It is viewed as the equivalent of shouting. This is a general rule of netiquette on the Internet.

6. Avoid any personal attacks.
- While we do not anticipate any such activity on this forum, we do need to mention this as a point of 'etiquette' and respect for one another. Posts should advance the discussion and, while it is natural that some discussions may get a little bit heated, the heat should be directed towards the issues, never towards other members.

7. Thank those who help you.
- If you post a problem and someone helps you, simply replying with a thank you message or an acknowledgment that their suggestions worked is very much appreciated and contributes greatly to the sense of community on the forum web site.

Remember, all message are public and will be viewed by many others. Do not post what you are uncomfortable being widely read.]]>
The term "Netiquette" refers to Internet Etiquette, which should include courteous and polite communications. The golden rule of Internet Etiquette is "Think before Posting".

General Posting Information:
Active debate, resource/information sharing, and questions related to end of life care for people with developmental disabilities are welcomed. When posting, please be courteous, objective, and respectful of the views of others. Each individual's ideas, thoughts, and impressions are unique and each as important as the next person's.

In order to facilitate productive discussions, here are some suggestions that may enrich your interactions.

1. Contribute actively and avoid reiterating - A post that says 'I agree' is okay, but consider enriching discussions by expanding on previous posts on the same topic (e.g., locating other examples or elaborating on the point).

2. Quote messages if you want to reply to them specifically.
- This can help others to follow your logic. Please exercise care with the 'Quote' from other's opinion and only quote what you need to make your point. It keeps our discussions easier for others to follow.

3. Keep messages relevant to the forum.
- Messages should contribute a topic being discussed, or introduce an idea relevant to the topic or to the mission of this forum. If you have any questions, please don't hesitate to contact the forum moderators for guidance.

4. Use a descriptive title for your posts. - This will help subsequent visitors to the Online Forum successfully identify your topic. Vague subjects such as "HELP!!" or "Urgent question!!!" may not be read by experienced users, as they provide no indication as to what your issue may be.

5. Avoid posting in all caps.
- It is viewed as the equivalent of shouting. This is a general rule of netiquette on the Internet.

6. Avoid any personal attacks.
- While we do not anticipate any such activity on this forum, we do need to mention this as a point of 'etiquette' and respect for one another. Posts should advance the discussion and, while it is natural that some discussions may get a little bit heated, the heat should be directed towards the issues, never towards other members.

7. Thank those who help you.
- If you post a problem and someone helps you, simply replying with a thank you message or an acknowledgment that their suggestions worked is very much appreciated and contributes greatly to the sense of community on the forum web site.

Remember, all message are public and will be viewed by many others. Do not post what you are uncomfortable being widely read.]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=44 Thu, 18 Feb 2010 15:57:25 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=44 February 2010 issue of the DD Hospice & Palliative Care Newsletter. These articles are posted here for members to read or to be shared for educational purposes but are not to be distributed beyond those purposes due to copyright law.

  Policy Issues in End-of-life Care.pdf (Size: 117.71 KB / Downloads: 5)

  End of life policies- Do they make a difference in practice.pdf (Size: 125.34 KB / Downloads: 6) ]]> February 2010 issue of the DD Hospice & Palliative Care Newsletter. These articles are posted here for members to read or to be shared for educational purposes but are not to be distributed beyond those purposes due to copyright law.

  Policy Issues in End-of-life Care.pdf (Size: 117.71 KB / Downloads: 5)

  End of life policies- Do they make a difference in practice.pdf (Size: 125.34 KB / Downloads: 6) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=43 Mon, 14 Dec 2009 20:40:48 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=43
  PC Nursing in relation to people with intellectual disabilities.pdf (Size: 149.12 KB / Downloads: 9) ]]>
  PC Nursing in relation to people with intellectual disabilities.pdf (Size: 149.12 KB / Downloads: 9) ]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=36 Tue, 12 May 2009 16:04:19 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=36 NYS DAAN and its Benefits to Members

The NYS Disabilities Advocacy Association and Network (NYS DAAN), receives start up funding from the DDPC, and is currently reaching out to individuals, families, groups and organizations across the state to become members. Through its advocacy and technical assistance activities, NYS DAAN promotes increased awareness of available services, addresses gaps in services, and develops proposals and policy statements to present to policy makers.

NYS DAAN offers with easy access to information through its on-line clearinghouse of best practices, training opportunities, and a wide range of up-to-date information, and resources, including a policy and legislative section for contacts to agency, state and federal representatives. To find out more about NYS DAAN, membership, and a list of groups and organizations that are members, go to www.nysdaan.org or call Kathryn Cappella at 585-533-1154.]]> NYS DAAN and its Benefits to Members

The NYS Disabilities Advocacy Association and Network (NYS DAAN), receives start up funding from the DDPC, and is currently reaching out to individuals, families, groups and organizations across the state to become members. Through its advocacy and technical assistance activities, NYS DAAN promotes increased awareness of available services, addresses gaps in services, and develops proposals and policy statements to present to policy makers.

NYS DAAN offers with easy access to information through its on-line clearinghouse of best practices, training opportunities, and a wide range of up-to-date information, and resources, including a policy and legislative section for contacts to agency, state and federal representatives. To find out more about NYS DAAN, membership, and a list of groups and organizations that are members, go to www.nysdaan.org or call Kathryn Cappella at 585-533-1154.]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=35 Tue, 12 May 2009 15:32:41 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=35 "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope" Anthony Back; Robert Arnold; James Tulsky

Physicians who care for patients with life-threatening or life-limiting illnesses face daunting communication challenges that they may not have been specifically trained for. This newly published book not only defines the specific communication tasks involved in talking with patients with life-threatening illnesses and their families but it offers both a theoretical framework and practical conversational tools that both physicians and clinicians can use to improve communication skills, increase satisfaction, and protect themselves from burnout.

Topics include delivering bad news, transition to palliative care, discussing goals of advance-care planning and do-not-resuscitate orders, existential and spiritual issues, family conferences, medical futility, and other conflicts at the end of life. Dr's Anthony Back, Robert Arnold, and James Tulsky bring together empirical research as well as their own experience to provide a roadmap through difficult conversations about life-threatening issues.

For more information visit the Cambridge Catalog site here:
http://www.cambridge.org/us/catalogue/ca...0521706186]]> "Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope" Anthony Back; Robert Arnold; James Tulsky

Physicians who care for patients with life-threatening or life-limiting illnesses face daunting communication challenges that they may not have been specifically trained for. This newly published book not only defines the specific communication tasks involved in talking with patients with life-threatening illnesses and their families but it offers both a theoretical framework and practical conversational tools that both physicians and clinicians can use to improve communication skills, increase satisfaction, and protect themselves from burnout.

Topics include delivering bad news, transition to palliative care, discussing goals of advance-care planning and do-not-resuscitate orders, existential and spiritual issues, family conferences, medical futility, and other conflicts at the end of life. Dr's Anthony Back, Robert Arnold, and James Tulsky bring together empirical research as well as their own experience to provide a roadmap through difficult conversations about life-threatening issues.

For more information visit the Cambridge Catalog site here:
http://www.cambridge.org/us/catalogue/ca...0521706186]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=31 Fri, 10 Apr 2009 17:19:28 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=31
"Caregiver Issues: Family, Direct Care Staff & Hospice Teams"

This month we are very fortunate to have Kathy Chowaniec joining us to help facilitate this challenging and difficult topic. Kathy has been a Registered Nurse for 21 years with experience in both critical and community care services. For the past ten years Kathy has been serving as the Senior Director of Access and Marketing at The Center for Hospice and Palliative Care in Buffalo. In this position she is responsible for assuring that all people in Erie County are aware of and are able to access the end-of-life services offered by the organization. In recent years the focus of her work has been centered on underserved, frail, aging individuals that reside in care facilities. This focus has included taking the lead on implementing three 'Quality Improvement Projects' funded by Community Health Foundation grants for improving outcomes for frail elders. One of these quality improvement projects focused on collaborating with a local provider for persons with developmental disabilities. This work produced an educational, community DVD aimed at improving collaboration and utilization of hospice services.

Kathy states that, "Having actively participated in events jointly sponsored by NYSARC and HPCANYS in the last few years ago has helped me to better understand the needs of persons with developmental disabilities throughout the continuum of care. Hospice Buffalo has become more actively engaged with local providers and has collaborated on numerous occasions to assure that persons with DD have person centered, goal oriented services which allow them to journey through the end of life with dignity."

** This month we would like to examine different aspects of the caregiving issue, therefore following are 3 different end-of-life scenarios that each present unique challenges for staff and other professionals who are working with individuals, families and staff who are providing care and support within the DD community**

I. The family caregiver of a person with developmental disabilities is now facing a life-limiting illness:Sally’s Case Study:
Sally is an 83 year old widow. Her son Michael, age 60, has lived in a group home for the last 20 years. Every Saturday morning Sally comes to the group home to take Michael to her home for the weekend. Recently, Sally’s health has failed. Within the last 4 weeks, she has been diagnosed with Stage IV ovarian cancer. This situation poses important questions:.
1. What are the next steps needed to care for and support both Michael and Sally?
2. What specific support does the residential staff need to provide Michael throughout his mothers illness?


II. A person with developmental disabilities, living in a community group home, has received a prognosis of 4 weeks to live; Regina’s Case Study:

Regina is a 59 year old woman with Down Syndrome. Regina functions in the severe range of mental retardation. The staff at Regina’s residence have been providing care to her for the last 14 years. Unfortunately, Regina’s condition has deteriorated over the last two months. The medical prognosis is that Regina has four weeks to live. Regina’s housemates and the residence staff are extremely upset.
Questions for consideration:
1. Where do you go from here to provide support for the staff of caregivers?
2. How is support provided to Regina’s housemates during illness and after her death?
3. What are the roles of the Hospice teams in providing support to both caregiver/family groups?

III. A staff member in a community group home has received a prognosis of 6-months to live; John's Case Study:

John is a 43 year old staff member. He has worked in the same residential home for the last 12 years. John has been diagnosed with Acute Myeloblastic Leukemia and has less than 6 months to live. He is married and the father of three sons. John’s wife has called the group home and has asked that the residents be provided information about John’s terminal illness. Now, the residents and staff in the house will need to be informed of John’s condition.
Several questions need to be addressed:
1. What is the role of hospice in relation to John’s residental 'family'?
2. What steps are necessary to support the residents?
3. How can this “teachable moment” be used as a proactive tool for end of life care for the residents in general?

The Forum is now open!]]>
"Caregiver Issues: Family, Direct Care Staff & Hospice Teams"

This month we are very fortunate to have Kathy Chowaniec joining us to help facilitate this challenging and difficult topic. Kathy has been a Registered Nurse for 21 years with experience in both critical and community care services. For the past ten years Kathy has been serving as the Senior Director of Access and Marketing at The Center for Hospice and Palliative Care in Buffalo. In this position she is responsible for assuring that all people in Erie County are aware of and are able to access the end-of-life services offered by the organization. In recent years the focus of her work has been centered on underserved, frail, aging individuals that reside in care facilities. This focus has included taking the lead on implementing three 'Quality Improvement Projects' funded by Community Health Foundation grants for improving outcomes for frail elders. One of these quality improvement projects focused on collaborating with a local provider for persons with developmental disabilities. This work produced an educational, community DVD aimed at improving collaboration and utilization of hospice services.

Kathy states that, "Having actively participated in events jointly sponsored by NYSARC and HPCANYS in the last few years ago has helped me to better understand the needs of persons with developmental disabilities throughout the continuum of care. Hospice Buffalo has become more actively engaged with local providers and has collaborated on numerous occasions to assure that persons with DD have person centered, goal oriented services which allow them to journey through the end of life with dignity."

** This month we would like to examine different aspects of the caregiving issue, therefore following are 3 different end-of-life scenarios that each present unique challenges for staff and other professionals who are working with individuals, families and staff who are providing care and support within the DD community**

I. The family caregiver of a person with developmental disabilities is now facing a life-limiting illness:Sally’s Case Study:
Sally is an 83 year old widow. Her son Michael, age 60, has lived in a group home for the last 20 years. Every Saturday morning Sally comes to the group home to take Michael to her home for the weekend. Recently, Sally’s health has failed. Within the last 4 weeks, she has been diagnosed with Stage IV ovarian cancer. This situation poses important questions:.
1. What are the next steps needed to care for and support both Michael and Sally?
2. What specific support does the residential staff need to provide Michael throughout his mothers illness?


II. A person with developmental disabilities, living in a community group home, has received a prognosis of 4 weeks to live; Regina’s Case Study:

Regina is a 59 year old woman with Down Syndrome. Regina functions in the severe range of mental retardation. The staff at Regina’s residence have been providing care to her for the last 14 years. Unfortunately, Regina’s condition has deteriorated over the last two months. The medical prognosis is that Regina has four weeks to live. Regina’s housemates and the residence staff are extremely upset.
Questions for consideration:
1. Where do you go from here to provide support for the staff of caregivers?
2. How is support provided to Regina’s housemates during illness and after her death?
3. What are the roles of the Hospice teams in providing support to both caregiver/family groups?

III. A staff member in a community group home has received a prognosis of 6-months to live; John's Case Study:

John is a 43 year old staff member. He has worked in the same residential home for the last 12 years. John has been diagnosed with Acute Myeloblastic Leukemia and has less than 6 months to live. He is married and the father of three sons. John’s wife has called the group home and has asked that the residents be provided information about John’s terminal illness. Now, the residents and staff in the house will need to be informed of John’s condition.
Several questions need to be addressed:
1. What is the role of hospice in relation to John’s residental 'family'?
2. What steps are necessary to support the residents?
3. How can this “teachable moment” be used as a proactive tool for end of life care for the residents in general?

The Forum is now open!]]> http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=28 Wed, 08 Apr 2009 16:10:51 +0000 http://www.ddhospiceandpalliativecare.org/mybb/showthread.php?tid=28
NYS OMRDD created and published Guidelines on DNR Orders in July, 2007. Use the following link to access that document - this is a very useful resource as it provides a logical overview of the issues involved for the DD community. Among other things, the contents include information on:
The definition of capacity Incapacity determinations
Necesssary Qualifications
Decision making for DNR orders
Priority of surrogates for DNR

To view, download or print the document follow this link:
http://www.ddhospicepalliativecare.org/dnr%20pub.pdf]]>
NYS OMRDD created and published Guidelines on DNR Orders in July, 2007. Use the following link to access that document - this is a very useful resource as it provides a logical overview of the issues involved for the DD community. Among other things, the contents include information on:
The definition of capacity Incapacity determinations
Necesssary Qualifications
Decision making for DNR orders
Priority of surrogates for DNR

To view, download or print the document follow this link:
http://www.ddhospicepalliativecare.org/dnr%20pub.pdf]]>