Why is it Important to Create Peer Grief Advocates?
Updated: Sep 8
Every living being will inevitably experience the process of dying. This universal journey transcends wealth, education, and ability. It naturally includes the often-overlooked needs of the intellectually and developmentally disabled (IDD) community in matters of death, dying, grief, and loss. Despite the IDD community's transition from institutionalization to community living, they continue to encounter challenges in fully integrating into everyday life. This is particularly true when navigating the processes and rituals associated with death and dying.
In death, individuals with IDD are often shielded from knowledge of dying and death experiences. This can lead to feelings of isolation and confusion. These feelings may result in behaviors often labeled as 'problematic,' such as withdrawal, sadness, and anxiety. The emotional complexity arising from multiple losses—friends, abilities, and independence—is neither understood nor addressed.
"When I first started, when I first came to you, you couldn’t believe how angry I was, like, you know, you couldn’t even…the first time I said I couldn’t talk about it, and then I finally had to let...finally had to let it out. When parents don’t tell the kids, they’re keeping secrets and hiding things from me an it hurts so much because I really want to know what’s going on, what’s happening, and because what they’re trying to do is protect their kids. You told me when I first started with you about the big heavy rock in my pocket. I remember that to myself. Now it just gets lighter and lighter every day." ( Compassionate Corner participant)
Residents of assisted living environments frequently encounter multiple layers of grief. They have been separated from familiar communities, families, jobs, and the foundational stability they have relied on for years. Decisions are now made on their behalf, resulting in a loss of agency. The regular turnover of support personnel subjects them to ongoing losses.
While working with the Compassionate Corner, many individuals expressed a desire to help others going through loss and the grief that follows. Bereaved individuals with intellectual disabilities indicated that rather than always being only the recipients of bereavement support, they want to use their experiences to help others—their bereaved peers, family members, and paid staff (Grosset 2023).
The relatability, shared experience, and immediate availability of Grief Advocates make this training a crucial consideration for all community or assisted living environments. Most importantly, the project is designed to ensure stability and sustainability through the training of advocates. While support changes or counseling may conclude, the creation of peer advocates aims to provide a reliable source of encouragement, readily available to assist whenever needed.
This blog will document the pilot project, aiming to inspire others to replicate the creation of grief advocates in their own communities. It will focus on delivering actionable strategies, valuable lessons, and insights into community impact.
The human soul doesn’t want to be advised, fixed, or saved. It simply wants to be witnessed, seen, heard, and companioned exactly as it is. When we make that kind of deep bow to the soul of a suffering person, our respect reinforces the soul’s healing resources – Parker J. Palmer (2016)
Preparing Grief Advocates: Essential Training Components
This pilot program offers training that emphasizes building empathy, active listening skills, and a compassionate presence. The program will be conducted over four 1.5-hour sessions from May to June 2026.
The Grief Advocates will be trained to accompany grieving friends using Wolfelt's companioning model. Wolfelt revolutionized bereavement support by moving away from the medical model. He firmly rejects the notion of treating grief. Instead, he champions a philosophy of journeying alongside individuals in their grief and pain. This approach empowers individuals as the experts of their own grief, honoring their spirit and being fully present without attempting to fix them (Wolfelt, 2016). The Advocates will be there to 'hold space' and listen attentively to the griever, without needing to solve the problem or provide advice.
Module One: Understanding Grief
Learning Objectives: Participants will understand the physical process of dying. They will engage in discussions about various types of grief and approaches to grieving. Participants will be encouraged to share their own definitions and insights on grief and loss. They will clearly distinguish between grief and mourning and possibly identify activities that effectively support mourning and healing.
Module Two: Holding Space
Learning Objectives: Participants will gain a clear understanding of the purpose of holding space and the importance of gentle accompaniment or companioning. They will reinforce what is genuinely helpful. Participants will confidently support the bereaved by quietly attending to them, without attempting to solve the problem or fix the person. Practical skills will be developed through role-playing scenarios.
Module Three: Coping with Emotions
Learning Objectives: Participants will understand that accompaniment can evoke strong emotions in those holding space. We will identify and discuss coping skills, emphasizing methods for self-care. Confidentiality and respect will be thoroughly addressed. Clear protocols for escalation and seeking help will be outlined, including when to engage staff or the Creative Grief Practitioner overseeing the interventions.
Module Four: Review and Certification
In this final module, participants will review and practice the skills developed throughout the training. Key messages will be reinforced, and certificates will be issued to Peer Advocates.
Role of Grief Practitioner in Training and Supporting Peer Advocates
As a Creative Grief Practitioner, I've crafted a specialized training program that acknowledges and enhances the diverse cognitive and physical abilities of the Advocates. By integrating feedback from Peer Advocates and residents, I will ensure the training remains continually relevant and evolves effectively. Additionally, mentorship, regular check-ins, refresher training, and group discussions will be conducted to support ongoing development.
By the end of this pilot, I hope to establish a community of practice designed to foster collaboration among Peer Advocates. This will allow us to share success stories and lessons learned, thereby strengthening and expanding the network to other agencies and communities that recognize this important need and the resources contained therein.
Note: This project was developed drawing from my experience with the Compassionate Corner and was informed by the work of Dr. Cara Grosset, which can be accessed here: Grosset, Cara, "Deep in the shadows of loss: An exploration of grief, mourning, and intellectual disability" (2023). Theses and Dissertations (Comprehensive). 2516. https://scholars.wlu.ca/etd/2516
"I am taking this (training binder) into the Library just to let them know that I went to a grieving training so I can show them how other people feel and be a great friend." (SG, Peer Grief Advocate)
