Hospice, Palliative Care, and Grief Support Programs
Hospice care is end of life care. Hospice can make it easier for people to deal with a life-limiting illness.
Many people who get hospice care may have less than 6 months to live. Some examples are:
- cancer
- ALS
- dementia
- lung disease
- stroke
People with disabilities including intellectual and developmental disabilities (IDD) may need hospice care at the end of their life. Hospice can be used in a group home or other residential program. Some people like to have end of life care at home. They want to be with their friends, family or staff they know.
Palliative care helps with pain relief, comfort and support for people living with serious illnesses. Some examples are:
- heart disease
- lung disease
- kidney disease
- Alzheimer’s disease
- MS.
Grief programs help children, teens and adults deal with the loss of a family member or friend. People can feel they are not alone and share feelings.
Hospice Resources
Hospice and Palliative Care Federation of Massachusetts
Online and reading resources about services and helpful info.
Hospice and Palliative Federation of Massachusetts Hospice Locator
Find a Hospice that serves your area. You can search by name of agency, town or city, services, and more.
National Association for Home Care & Hospice (NAHC)
NAHC offers hospice care guidance and support for hospice providers.
Learn more about the Home Care & Hospice Basics — finding providers, best practices, patient rights, and more.
Hospice Care providers in our DisabilityInfo.org database.
Palliative Care Resources
Honoring Choices Massachusetts What is Pediatric Palliative Care? (.pdf)
Pediatric palliative care offers support for children with serious medical conditions and their families. The goal is to help children live as well as they can for as long as possible.
Massachusetts Pediatric Palliative Care Network (PPCN)
A network of people caring for children and youth living with life-limiting illness and their families.
Palliative care providers in our DisabilityInfo.org database.
Grief Resources
HEARTplay is a heart-centered bereavement program. Our mission is to support children, teens and young adults of all abilities. We help them and their families. They are coping with the serious illness or death of an important person in their lives.
Grief Counseling and Support Providers
Grief counseling and support providers in our DisabilityInfo.org database
Other Info and Resources for Caring for People with IDD Nearing the End of Life
The American Association on Intellectual and Developmental Disabilities (AAIDD) has information about end of life care for people with IDD.
End of Life Care for People with Developmental Disabilities
NextAvenue has an article about “Why talking about this taboo subject with your loved one early on is important”. The average life expectancy for people with Down syndrome is now 61.
Hospice and Palliative Care for Adults with Intellectual and Developmental Disabilities Webinar
Hospice Foundation of America offers an online training webinar. This webinar will explore hospice and palliative care for people who have intellectual and developmental disabilities (IDD). There is a fee for the webinar and CEUs may be earned.
How to Provide the Best Care for Patients with Intellectual and Developmental Disabilities (IDD)
The Center to Advance Palliative Care shares UMass Chan’s Medical School student Naaz Daneshvar’s suggestions for caring for people with IDD.
Fact Sheet Created 1/23/25
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Disclaimer: INDEX is pleased to provide you this information. Please note, this information is not comprehensive, nor is it intended to take the place of professional advice. We encourage you to check other resources of such information. No endorsement by the University of Massachusetts Chan Medical School, DisabilityInfo.org, INDEX, or affiliates, should be inferred. We reserve the right to remove, to modify, or to add any information at any time, for any reason, and without notice.
