Links and Resources

The Advisory Group for End Of Life: Last Passages, has developed a library of resources that considers and addresses many aspects of end-of-life care for persons with developmental disabilities. These include collections, which represent what is considered to be “Best Practices” and documents that were collaboratively generated by this group and from various other resources.

This library is divided into:

Several of the resources address more than one of these categories.

News

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Advance Planning

Planning For The End Of Life Module
Provides guidance for end-of-life planning. Links include life and death issues, hospice care, and financial (e.g. insurance) and legal (e.g. living will) aspects.
A Guide to End-of-Life Care for Seniors PDF document
This publication is a ten chapter guide to end-of-life care for seniors covering 189 pages. R. Fisher, M. M. Ross, M. J. MacLean from the faculty of medicine at the University of Toronto developed this guide along with other Canadian contributors.
Ethics and Intellectual Disability PDF document
An important article from the Ethics and Intellectual Disability Newsletter that considers the ethical implications in end of life healthcare decision making for persons with intellectual and developmental disabilities in New York state. (PDF file is over 2MB in size)

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General

Acronym List: Developmental Disability Field PDF document
This document is a comprehensive listing of common acronyms used in the developmental disabilities field. This list is primarily geared to New York State, and there may be some state-by-state differences.
Alzheimer’s Disease and Down Syndrome PDF document
Written by Dr. Ira Lott and found on the National Down Syndrome Society web site, this short article provides an excellent overview on Alzheimer’s Disease in persons with Down Syndrome.
Associated Medical Conditions in Persons with Down Syndrome PDF document
Published by the National Down Syndrome Society, this is an excellent summary of common co-occurring medical conditions that children and adults with Down Syndrome may develop.
Clinical Information on Endocrine Conditions in People with Down Syndrome PDF document
Written by Dr. Earnest McCoy, this article provides a well-written overview of endocrine conditions commonly found in individuals with Down Syndrome.
Common Questions about Autism PDF document
Found on the Albany, NY, chapter of the Autism Society of America, this document answers the most commonly asked questions on autism.
Facts about Developmental Disabilities PDF document
Provides basic information about some of the more common types of developmental disabilities.
End-of-Life Care PDF document
Co-edited by William C. Gaventa, MDiv and David L. Coulter, MD., End-of-Life Care: Bridging Disability and Aging with Person Centered Care features two primary papers on the controversial issue of end-of-life care within the disabled and aging populations. Each paper explains clearly and honestly about the multitude of issues involved using person centered care.
Health Care Guidelines for Individuals with Down Syndrome PDF document and A Guide for Use of the Health Care Guidelines for Parents and Physicians PDF document
Comprehensive resource outlining recommended health practices with individuals with Down Syndrome across the life span. Instructions for using the Health Care Guidelines are also provided.
Individualized Service Plan Template PDF document and ISP Guidelines PDF document with Sample Addendum for Hospice and Palliative Care PDF document
A guide to writing comprehensive individualized service plans (ISP), this document includes descriptions of what information goes into each component of the ISP. Additionally, a sample blank ISP is available for download, along with a guide to adding hospice/palliative care services to an ISP is provided.
NASW WebEd

NASW’s Web-based Education site, provides an on-line continuing education forum for social workers. Courses presently available to social workers include Understanding Aging, Understanding Cancer, and Understanding End-of-Life Care. New courses are added frequently.

Neurology PDF document
An informative article on neurological issues for people with Down Syndrome.
People First Language
A powerful commentary by Kathie Snow, a well-known expert in the field of disabilities, this article describes the power of the words we use and the importance of using “people first” language.  
Special Issues in Pastoral Care: Grief, Death, and Dying PDF document
This does not pretend to be a complete listing of issues related to death and dying, but a partial listing of resources related to grief, death and dying for persons with intellectual disabilities or other disabilities and their families. There are a great number of articles related to ethical and treatment issues for persons with mental retardation and disabilities, but these focus more on articles and resources that may be of particular help in pastoral care. A national project entitled Last Passages also focused on grief, loss, and end of life care with people with intellectual disabilities.
Web Resources on Developmental Disabilities PDF document
A compilation of web resources dedicated to providing information on people with developmental disabilities.

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Palliative Care

20 Improvements in End of Life Care
Lists twenty suggested improvements for internists in end-of-life care. Americans for Better Care of the Dying prepared it and Don Berwick, MD presented it at the ACP-ASIM Annual Meeting, April 22, 1999.
Agreement for Hospice Care PDF document
A sample draft agreement to provide hospice care for individuals with developmental disabilities in need of hospice care
Cancer Control Journal Vol 3, No. 3 May/June 1996
An issue of Cancer Control Journal on hospice and palliative care. Besides this complete journal, there are numerous links e.g. “Ten best readings in palliative care”. (http://www.moffitt.usf.edu/pubs/ccj/v3n3/toc.html)
Center to Advance Palliative Care
The Center to Advance Palliative Care (CAPC) is geared toward clinicians and other service providers. The web site is an excellent resource on hospice and palliative care along the continuum from first diagnosis to end of life.  In addition to a wealth of information, the CAPC has assembled a collection of tools to assist in designing, improving, and sustaining palliative care programs.
The European Association for Palliative Care (EAPC)
Links to European organizations, journals and other links on palliative care.
Geriatric Health
http://www.ama-assn.org/ama/pub/category/4642.html
Hospice Foundation
Includes a “caregiving resources” link that includes articles, a resource list of organizations, facts on caregiving, and assessment tools
International Association for Hospice and Palliative Care
Its “article of the month” link supplies an article for the last five, including the current, months. Its manual covers twelve separate aspects of palliative care including models of and stress related to it. The site also has the IAHPC’s newsletters for the past two years, each with an article of the month.
Johnson & Johnson’s Caring Initiative
Johnson & Johnson’s Caring Institute provides a comprehensive web site on care giving, death and bereavement, and other helpful information for caregivers. The Caring Initiative also provides fact sheets and tips on many facets of providing care, as well as a monthly newsletter.
Missoula - Vitas Quality of Life Index (MVQOLI): A Measure for Terminal Care
http://www.dyingwell.org/MVQOLI.htm
National Hospice and Palliative Care Organization
Includes the full report of the success of the Medicare hospice benefit, recent articles, an explanation and definition of trauma/disaster services related to hospice care and the agencies that supply them, four grief and bereavement guides, and information about NHPCO.
The Pain/Palliator Care Resource Center (COHPPRC)
A clearinghouse for pain management/palliative care materials.
Palliative Care vs. Hospice PDF document
Provides questions and answers concerning the differences and similarities between hospice and palliative care, as well as a glossary of common terminology about end-of-life decision-making. An excellent guide for anyone faced with decisions about end-of-life planning and care.
Questions for Hospice Workers PDF document
A tool for evaluating hospice programs and the services and interactions that take place in the residence.
Recommended Curriculum Guidelines for Family Practice Residents
Offers curriculum guidelines endorsed by the American Academy of Family Physicians for residents in family practice.

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Bereavement Care

Hospice Net
Links to information on services, patients, care givers, and bereavement. (Most of the links are ”how-to’s”).
Vista Care

Vista Care is a national network of hospice programs across 14 states. Vista Care’s web site provides information for people needing hospice, their families, and providers.