The Boggs Center on Development Disabilities
The Boggs Center is New Jersey’s federally designated University Center for Excellence in Developmental Disabilities and is part of Rutgers Robert Wood Johnson Medical School, Department of Pediatrics. Since its inception in 1983, The Center has emphasized a community based, lifespan approach to meeting the needs of individuals with developmental disabilities and their families.
The Boggs Center provides community and student training and technical assistance, conducts research, and disseminates information and educational materials. Activities of The Boggs Center are guided by our Consumer Advisory Council, and partnerships with people with disabilities, families, state and community agencies, and policy makers.
Boggs Center Resources about Grief and Loss
"Someone once observed,
“All grief is like all other grief,
some other grief,
no other grief.”
This is universally true but no more so than in the lived reality of persons with intellectual and developmental disabilities (IDD).
While there is general information available on grief and loss from a wide variety of sources, information pertaining to the sometimes unique complexities of mourning for a person with IDD can be harder to find.
Below are some resources that may prove helpful as you strive to compassionately support people in your life who are experiencing loss and processing grief.
SUPPORTING BEREAVED PEOPLE WITH LEARNING DISABILITIES
"When people with learning disabilities are bereaved,
their grief is often unrecognized and unsupported.
People with learning disabilities may be excluded from conversations about death and dying, and may have limited experience of the events and processes that follow a death, such as funerals. Despite this, people with learning disabilities experience grief in a similar way to people without learning disabilities...
Stigma and exclusion
People with learning disabilities are often excluded at the end of a friend or loved one’s life. This exclusion can make the death sudden, as opposed to anticipated, shocking and unexpected, and can cause problematic grief responses. A lack of social support can result in strong emotional reactions, such as guilt, anger and feelings of powerlessness.
Social context and death
The social context of a death can also affect how someone responds to bereavement. A supportive environment, where grief is facilitated, can help people process loss in a healthy manner.
When people are prevented from communicating about bereavement, challenging grief responses can develop. Unfortunately, this can often occur for bereaved people with learning disabilities.
How do people with learning disabilities experience grief?
Bereaved people with learning disabilities will have typical reactions like anger, denial, sadness and guilt, and experience grief in a similar manner to people without learning disabilities.
However, bereaved people with learning disabilities often struggle to express and articulate their grief in a meaningful way.
Support workers should be aware that any behavioural changes after a bereavement may indicate distress."
"What Losing My Disabled Mom Taught Me About Ableism.
Plus, how it informs the pandemic.
"I carry guilt for making my mom invisible, but I also see how I internalized larger societal views. This dichotomy makes me think about younger caregivers who, in the face of a global pandemic, might not have the confidence, access, or stamina to confront an already strained health care system.
I fear that the newly bereaved will feel isolated in their grief, as I have. But my hope, as new caregivers emerge en masse and many people become mourners, is that society begins to dismantle the ableist infrastructure that impedes health—and that we as caregivers have the courage to do the same."
"COVID-19 guide for care staff supporting adults with learning disabilities or autistic adults
Death and bereavement:
The current crisis means there is a lot of discussion of death in the media, and there is an increased chance that everyone, including people with a learning disability or autistic people, will experience the death of a family member, housemate, or friend. It may be tempting to try and shield people with a learning disability or autistic people from upsetting subjects such as death, but generally this is not helpful.
People with a learning disability and autistic people, of course, experience grief, and having a learning disability or autism does not mean that a person cannot understand or deal with bereavement. Each person will grieve in their own way and it is important to take a person-centred approach to support them through this process. Having open and honest discussions about death is often the best approach. It is generally advisable to avoid euphemisms like ‘gone to sleep’ or ‘gone to a better place’, which can cause confusion, especially with someone people who may interpret such comments very literally. Do not be afraid of showing your own emotions while supporting someone through a bereavement. People with learning disabilities can feel supported by seeing that you are upset too, but be prepared to explain the reasons for such emotions. It may be useful to have conversations about death before people have personal experience of it. Media discussions of deaths due to coronavirus could be a way to start these conversations."
Autism Speaks - Grief & Bereavement Resources
"Supporting Individuals on the Autism Spectrum Coping with Grief and Loss through Death or Divorce"
Indiana University - Indiana Institute on Disability and Community
"How Do People with an Intellectual Disability Grieve?
Death and loss are difficult for anyone to deal with, and the grieving process is often painful. But how is this process in people with an intellectual disability and what can you do to help them?"
"An exploratory study of self‐reported complicated grief symptoms in
parentally bereaved adults with intellectual disability"
Conclusion: Study has demonstrated the capacity of people with ID to self‐report personal experience of symptoms of complicated grief, when appropriate and accessible assessment tools are used. Some symptoms were more evident among bereaved individuals (compared with non‐bereaved participants), and they tended to be from separation distress criteria. This may indicate the relevance of these symptoms for people with ID and question the existing criteria for PCBD in this population, which may have clinical implications for supporting people with ID experiencing a more complicated bereavement response."
"Let's talk about when someone is ill or dies from the coronavirus for people with learning disabilities" - Free Download / Pictures - Images and suggested questions to prompt discussion about the impact of coronavirus on people's lives, and especially the impact of people dying from coronavirus.
"When Someone Dies from Coronavirus - A guide for family and carers.
An illustrated resource on how to respond when somebody dies from coronavirus and coping with grief and bereavement. Aimed at family and carers.
(- Nederlandse vertaling // - Traducción Española)"
"Good Days and Bad Days During Lockdown"
A wordless booklet with scenes from existing Beyond Words stories looking at what makes a ‘good day’ and what makes a ‘bad day’.
Scenes address social distancing, lockdown, mental health and daily routines.
(- Traducción Española)"
“How to talk about death and grief with someone who has a Learning Disability
Surrey and Borders Partnership NHS Trust - This video aims to help family members or carers who may be worried about how to explain the death of someone close to the person who they support. It includes some tips on how to approach these difficult conversations and provides some resources which can help you with this as well as how to support them to manage their feelings.”
With your access and use of the MyGriefAngels.org site, COVID19 Dedicated GriefSupportOnline.com site, the Twitter.com/MyGriefAngels feed and/or any of these sites’ information, education, community shared postings, apps, resource directory and any other content
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“Coping with Big Feelings"
“Supporting the person you care for anxiety about coronavirus
Surrey and Borders Partnership NHS Trust - This video is for carers of people with learning disabilities and focuses on how to recognise anxiety in the person with learning disabilities that you support. It gives some techniques to use with people with learning disabilities.”
“Supporting the person you care for breathing, mindfulness and relaxation techniques.
Surrey and Borders Partnership NHS Trust - This video is for carers of people with learning disabilities and focuses on the specific anxiety management techniques that we have recommended for people with learning disabilities. The video includes why these techniques might be helpful and things to consider when supporting the person you care for to try them out. The videos of the specific techniques that are referred to are:
• Balloon Breathing Exercise
• The 5 Seconds Breathing Exercise
• Breathing Exercise Using Your Imagination
• How to Relax the Muscles in Your Body 1
• How to Relax the Muscles in Your Body 2
• Explaining Mindfulness and the Five Things Exercise
• The My Relaxing Place Exercise”
“Living with Loss for the Developmentally Disabled - Part 1.
Produced by the Molly Lawson Foundation. mollylawson.org.
This two-part series helps family and providers understand grieving from the point of view of the developmentally disabled. Part 1 focuses on identifying and understanding grief reactions.”
This is a Work in Progress section of the site,
and it was started thanks to the timely and excellent input of
a disabled site user and virtual group participant and
her very caring caregiver.
They shared and highlighted to us
the lack of information and actual online resources
to help people with disabilities
during these isolating COVID19 lockdowns.
As with every My Grief Angels initiative,
we had volunteers researched the availability of these resources,
and their conclusion was
that there is a strong demand
for virtual grief support resources
for people with disabilities and their caregivers,
but at the same time
there is massive lack of adequate virtual resources
to actively help people with disabilities
who are grieving the loss of loved ones
during this pandemic.
The majority of online and virtual resources
identified by our volunteers research to date
have been some great articles and reports
on the community's need along with some
guidelines for caregivers and others trying to help
people with disabilities who are grieving.
However, very few "free" active accessible
virtual grief support assistance,
trained grief counselors/professionals,
have been found to date, but we are actively
seeking more virtual volunteers to help us
dig deeper and by state and local communities
to try to identify more virtual resources.
If you have suggestions for resources to include here,
or would like to virtually volunteer on this project,
please fill out the form below.
“Managing feelings after somebody has died.
Surrey and Borders Partnership NHS Trust - This video is for people with learning disabilities to help them understand and manage their feelings after somebody has died. It helps to explain what you may be feeling and things that you can do to help manage your feelings.”
“Living with Loss for the Developmentally Disabled - Part 2.
Molly Lawson Foundation - This two-part series helps family and providers understand grieving from the point of view of the developmentally disabled. Part 2 focuses on tools for helping individuals with developmental disabilities grieve.
“Managing worries about death or illness.
Surrey and Borders Partnership NHS Trust - This video aims to reduce any anxiety carers may have about talking about illness or death with the person with learning disabilities they support. It includes some tips on how to approach these difficult conversations and provides some resources which can support with this.”
“Grief and Bereavement: Supporting People with Developmental Disabilities"
Death is something that we all have to face at some point in our lives. Knowing more about the feelings and thoughts that come after the death of someone close to us can help us and the people we support. This presentation will focus on the grief that comes after someone dies.This presentation is for general information only. If you have any concerns regarding yourself or someone you are supporting, please contact a healthcare professional. If you are in crisis please contact your local crisis line or access emergency services.
Dying Matters - "Like everyone else, people with learning disabilities need to be able to acknowledge their loss and be able to mourn when someone close to them dies. In this 15 minute film, people with learning disabilities tell their stories and share their wishes to support other people with learning disabilities in becoming more comfortable talking about dying, death and bereavement.
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