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Grief, Loss and End-of-Life
  >>Located in Store(s): Life and Future Planning , Health and Safety

This department features materials that help people with disabilities and others deal with serious health and/or end of life issues. While this topic is often associated with aging, there is information especially for young people, parents and caregivers.

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Product Categories
Books, Publications & Reports (printed and/or online) (41 Products)
Electronic Media (17 Products)
Organizations, Programs, and Projects (4 Products)


Books, Publications & Reports (printed and/or online)
A Good Death Guides
These booklets help everyone prepare when a person with intellectual disabilities is dying. There is an easy-to-read guide for people with disabilities. There is also a guide written for DSPs and another just for healthcare professionals.
A Process of Grief: The Reality of Grieving a Child with Complex Health Care Needs
This article is about parenting a child who is medically fragile.
Advance Directives and Advance Care Planning for People with Intellectual and Physical Disabilities
This paper is about end of life planning for people with intellectual or physical disabilities. The full report is available online.
Aging and Disability: Research and Clinical Perspectives
A text-book discussing many aspects of aging, about both people with disabilities who are aging and aging people who now have disabilities
Am I Going to Die? (From the "Books Beyond Words" series)
This book uses a story with drawings to explain what it is like to die slowly from an illness It is easy to understand and can be read together with a helper.
An Introduction to Pediatric Palliative Care
This article talks about end of life care for children with disabilities.
Autism and Loss
A book about how people with Autism experience loss and grieving, and ways that others can provide support.
Bereavement, Loss and Learning Disabilities: A Guide for Professionals and Carers
This book is about the stages people with intellectual disabilities go through when someone dies. It also suggests ways to help.
Caring for People with Learning Disabilities who are Dying
This book is about taking care of people with learning disabilities who are dying.
Conflicting Beliefs (Case Study)
This case study addresses ethical issues surrounding end-of-life care for people with disabilities. It is available online and can be used to train health care providers.
Contemporary and Innovative Practice in Palliative Care
This book is about end-of-life care. You can download it online for free and it has a chapter devoted to older adults with intellectual disabilities.
End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities
A book written to help professionals and families with end-of-life care decisions for people with intellectual and developmental disabilities.
End-of-life Care: Bridging Disability And Aging With Person Centered Care
A book about end of life care both for people with disabilities and people who are aging. Its chapters are written by experts in the field who respond to two introductory papers.
Estate Planning for People with a Chronic Condition or Disability
This book is about estate planning for people with disabilities or chronic illness.
Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum
This book offers help for dealing with grief. It has many activities and is directed towards children and youth on the Autism spectrum.
Five Wishes
Five Wishes is a booklet where you put in writing how you want things handled for you at the end of life.
Guidebook on Helping Persons with Mental Retardation Mourn
This book helps in supporting people during times of loss, such as a death, job or residential change, and other situations that cause bad feelings.
Helping People with Developmental Disabilities Mourn: Practical Rituals for Caregivers
This is a book for caregivers to help people with disabilities mourn the death of a loved one.
How to Break Bad News to People with Intellectual Disabilities A Guide for Carers and Professionals
This book explains how to share difficult news with people who may have difficulty understanding. There is also a website that shares a lot of information from the book.
Individuals with Intellectual Disabilities: Struggling with Loss and Grief
This is a scholarly paper about how people with intellectual disabilities respond when someone close to them dies. It also has lots of ideas about how to help.
Learning Disabilities and Bereavement
This article has ideas for families and DSPs about helping people with disabilities go through the grieving process.
Lessons in Grief and Death: Supporting People with Developmental Disabilities in the Healing Process
A book for helping people with disabilities cope with the loss of someone in their life.
Letting Ruth Go
This news expose is written by a mom about losing her daughter who had multiple disabilities. It was published in the Boston Globe and you can read the full text online.
Living and Dying With Dignity: The Best Practice Guide to End-of-Life Care for People With a Learning Disability
This guide is about end-of-life care for people with learning disabilities.
Living with Learning Disabilities, Dying with Cancer Thirteen Personal Stories
This book tells the stories of people with disabilities who are dying of cancer.
People Planning Ahead: Communicating Healthcare and End-of-Life Wishes
This workbook helps caregivers support someone through end of life issues.
Person Centered Planning and Communication of End-Of-Life Wishes With People Who Have Developmental Disabilities
This paper is about using person-centered planning with people who have disabilities and are nearing the end of their lives. It is available online.
Person Centered Planning for Later Life: Death and Dying - A curriculum for Adults with Mental Retardation
This training curriculum helps people with mental disabilities understand death and grieving. It includes six lessons lead by a facilitator and a student notebook. Pictures and interactive options, such as field trips to a funeral home, are included.
Persons with Intellectual Disabilities: Facing Dying and Loss
This chapter is included in a book about how culture affects end-of-life care.
Quality in Practice: End of Life Issues
This fact sheet provides suggestions on how organizations can best support people with disabilities near the end-of-life.
Ron's Feeling Blue (From the "Books Beyond Words" series)
This book uses a story with drawings to explain what it is like to experience depression. It is easy to understand and can be read together with a helper.
Supporting People with Disabilities Coping with Grief and Loss
This book is about helping people with disabilities deal with grief and loss.
Supporting People with Intellectual Disabilities Experiencing Loss and Bereavement: Theory and Compassionate Practice
This book is about helping people with disabilities get through the grieving process.
Supporting people with learning disabilities who are affected by a relative or friend with cancer
This paper talks about the needs of persons with intellectual disabilities when someone close to them has cancer.
The Route to Success in End of Life Care - Achieving Quality for People with Learning Disabilities
This guide is about end of life care and people who have intellectual disabilities.
Thinking Ahead: My Life at the End
This booklet and video help people with disabilities talk about advance care planning and express their wishes for end of life care. Both are available online for free.
Thinking Ahead: My Way, My Choice, My Life at the End
A workbook to assist people in making decisions about the end of their life. There are also three videos about the guide you can watch online.
Understanding Death and Illness and What They Teach About Life: An Interactive Guide for Individuals with Autism or Asperger's and their Loved Ones
A book to help people with autism with questions they may have after the death of a loved one.
When Dad Died, 3rd Edition (From the "Books Beyond Words" series)
This book uses a story with drawings to explain what it is like to have a parent die. It is easy to understand and can be read together with a helper
When Mum Died, 3rd Edition (From the "Books Beyond Words" series)
This book uses a story with drawings to explain what it is like to have a parent die. It is easy to understand and can be read together with a helper
When Somebody Dies (From the "Books Beyond Words" series)
This book uses a story with drawings to explain what it is like to have a close friend die. It is easy to understand and can be read together with a helper.
Electronic Media (Videos, CDs, T.V., Radio, Websites, etc.)
Aging and Disability
This website has a lot of information about healthy aging, the process of dying, and supporting people who are grieving a loss. It was prepared by L'Arche Canada.
Aging and Disability Website
This website has information about aging as it affects people with intellectual disabilities.
Breaking Bad News
This website has ideas about how to break bad news to people who have disabilities.
Compassionate End of Life Care; For Adults with Developmental Disabilities
This DVD has three speakers who talk about taking care of people with disabilities as they die.
Dealing With Grief and Loss: A Team Approach
This CD-ROM has training for DSPs. It is about supporting consumers when someone dies.
Death, Loss and the Grief Process for Individuals with Developmental Disabilities
This CD has a talk about grieving and people with intellectual disabilities.
Grief Speaks
This web site has information about how grief affects people, and what helps.
Honoring Choices Minnesota
This website is about talking with your family and making end of life care decisions. There are many short video clips, some featuring people who have disabilities.
John and Michael
This film is an animated love story about two men with Down Syndrome. It explores the themes of love, loss and healing. You can watch the entire 10 minute film online.
Loss and Grieving: A Lifelong Process for Consumers and Families
This DVD is about how people with dual diagnoses might experience grief and loss. It can be used to train staff.
My White Shirt
This film is about a man named Rob who has Down Syndrome. He is an actor who sometimes deals with grief.
Supporting Adults with Intellectual DisabilityThrough Bereavement and the Grief Process
These PowerPoint note pages explain the grief process for DSPs. The idea is when DSPs understand their own reactions to grief and loss, they will be better able to help others.
Thinking Ahead: My Life at the End
This booklet and video help people with disabilities talk about advance care planning and express their wishes for end of life care. Both are available online for free.
We’re Living Well But Dying Matters
This film features people who have intellectual disabilities talking about death and dying. You can watch it online for free.
When Persons with Intellectual Disabilities Grieve
This is a short article on the web.
Wills, Trusts and Estates
An on-line class to write a will and set up an estate. After you take the class, you'll be ready to meet with your lawyer to do this. Included: how to decide who to leave money to, setting up an account, and choosing who will carry out your wishes.
Working with Bereaved People who have Mental Retardation
This CD is about how to help people with intellectual disability who are grieving .
Organizations, Programs, and Projects
Lending Individuality, Guidance and Hope To end of life transitions (LIGHT)
The LIGHT program assists people with intellectual disabilities as they move through the grieving process. It also provides training for DSPs about supporting people who are grieving - both live and via webinar.
PCPLD Network (Palliative Care for People with Learning Disabilities)
This network is interested in end of life care for people with intellectual/developmental disabilities. It is centered in Great Britain and has spread to other European countries.
Sonoran UCEDD's Aging and Transitions Project
A project from the Sonoran Center for Excellence in Arizona. This project seeks to improve aging-related and end-of-life care for people with developmental disabilities.
We Care A Lot Foundation
This Northern California organization offers many programs to help people with disabilities live good lives in the community. Some of their programs are led by self-advocates.


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This web site is maintained by the Research and Training Center on Community Living with support from the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute and the Administration on Intellectual and Developmental Disabilities. E-mail weste050@umn.edu.
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