The IDD Community Support Hub :

A place to find information, support and hope

A large tree provides shelter and support for small saplings growing at its base Why is it Important to Create Peer Grief Advocates? Every living being will inevitably experience the process of dying. This universal journey transcends wealth, education, and ability, naturally including 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 institutio

When someone we care about faces the end of life, the experience can feel overwhelming. This is especially true for individuals with intellectual and developmental disabilities (IDD). Their needs are unique, and the support they require must be gentle, clear, and deeply understanding. I want to share how virtual doulas for IDD care are making a difference. These doulas provide comfort, guidance, and companionship during a time that can be filled with uncertainty and fear. Vir

The Compassionate Corner: A Supportive Space for Grief in the IDD Community The Compassionate Corner, a joint initiative between A Good Transition and Compassionate Care Hospice Society, has been serving the IDD community in Rocky Mountain House for just over two years. During this time, we have welcomed over a dozen participants seeking support to navigate their various losses. Our aim is to provide a nurturing environment where individuals can find solace and understanding.

Transitions present challenges, introducing change, uncertainty, and sometimes fear. For individuals with intellectual and developmental disabilities (IDD), these moments demand additional care and understanding. Transitions encompass more than just life to death; those with IDD encounter numerous changes, often daily, that can impact mood and confidence. I want to share insights and practical advice to help make these transitions smoother and more supportive. Together, we c

Grief is a universal experience. It touches all of us at some point. But grief does not look the same for everyone. For individuals with intellectual and developmental disabilities (IDD), grief can be different. It can be complex, subtle, and sometimes misunderstood. This difference is often called atypical grief. When someone with IDD loses a loved one or faces a significant change, their way of grieving may not follow the usual patterns. This can make it harder for families

Facing the end of life is a deeply personal journey. For individuals with intellectual and developmental disabilities (IDD), this journey can be even more complex. It involves unique challenges, emotions, and needs that require gentle understanding and compassionate support. This is where virtual end-of-life doulas step in, offering a new kind of care that is accessible, empathetic, and tailored to the IDD community. Virtual end-of-life doulas provide comfort, guidance, and c

Losing a parent is one of the most profound experiences anyone can face. For individuals with intellectual and developmental disabilities (IDD), this loss can feel even more overwhelming. The world may seem confusing, emotions may be hard to express, and the path forward may feel uncertain. I want to share gentle, clear guidance to help support those with IDD through this difficult time. Together, we can create a space of understanding, patience, and care. Understanding IDD p

Grief is a deeply personal experience. It touches each of us differently. For individuals with intellectual and developmental disabilities (IDD), grief can be even more complex. Sometimes, the signs of grief are subtle. They may go unnoticed or misunderstood. This can leave those who are grieving feeling isolated or unsupported. It is important to recognize these hidden grief signs for IDD. Doing so helps us provide the care and compassion that everyone deserves. Recognizing

A handmade clay red frog with bulging green eyes sitting on a grey chair. In this Substack article written for the Creative Grief Studio, I share my experiences and insights from my work with The Compassionate Corner. This is an 8-week grief and loss program I developed specifically for the local IDD community in Rocky Mountain House, Alberta. The program is supported by The Compassionate Care Hospice Society (2016) and Rocky Support Services Society. https://creativegriefstu

A short 7 minute video where Marla sits down with Josh, one of her participants, who discusses The Compassionate Corner and how it helps him with his grief.

A short 4 minute powerpoint presentation on grief and loss in the IDD community and some of the learning that has come from my work with The Compassionate Corner.

A framed picture of a lone tree sitting on a wooden desk When dementia and loss occur together, the experience of grief can become more complex and less predictable. Memory, recognition, and understanding may shift from day to day, making it difficult to know how loss is being processed or expressed. This is made more challenging if the individual already experiences challenges in communicating needs or emotions. For individuals in the IDD community, this overlap can create a

An empty, unmade bed underneath a window. The first few days after a parent dies can feel disorienting. Time moves differently. There may be a lot happening around you—arrangements, conversations, decisions—but very little that feels settled. In addition, it may not feel real and accepting this permanent and profound loss will take time. For individuals in the IDD community, this period can be especially confusing. A parent is often a central figure in daily life, providing s

Waves of sand expanding into the distance. Planning ahead is not always an easy thing to approach, especially when it relates to illness, loss, or end-of-life care. It can feel uncomfortable, or even unnecessary in the moment. But for individuals in the IDD community, planning ahead can make a significant difference in how support is experienced over time. Without a plan, decisions are often made quickly and under pressure. Information may not be shared clearly. Support may b

A wooden gate sits at the end of a path that leads into a forest. Grief is not always recognised for what it is. It can be missed, minimised, or explained away, especially when it does not look the way others expect. For individuals in the IDD community, this happens more often than it should. There is a tendency to view grief through a narrow lens. It is expected to be visible, expressed in certain ways, and to follow a pattern that others can understand. When it does not, i

A blanket left behind on the ground in a meadow. When someone is grieving, we often feel a quiet pressure to do something. To say the right thing. To help move things forward. To ease what feels heavy or uncertain. To fix the issue. This can come from care, from discomfort, or from not knowing what else to offer. But grief does not ask to be solved. It asks to be met. For individuals in the IDD community, this becomes even more important. Grief may not always be expressed cle

A narrow dirt path that winds its way through tall grass. Grief is often spoken about as though it follows a pattern. There is an expectation that it will look a certain way, move through certain stages, and eventually soften over time. While this may be true for some, it does not hold true for everyone, and it is especially not the case for many individuals within the IDD community. For people with intellectual and developmental disabilities, often referred to as the IDD com