I've been there
Claire shares her advice for someone else experiencing grief.(3:22)Video transcript
Grief is the natural and universal response to loss, but the grief experienced by people with intellectual disabilities often goes unrecognized or unacknowledged.

Intellectual disability includes a wide range of individual abilities, and grief responses will vary depending on many factors (e.g., individual personality, loss history, relationship with the person who died, and available supports).

Providing effective grief support takes time and must be based on an individual’s needs, determined in collaboration with the person and their family/caregivers. Your patience, respect, and good listening skills are key ingredients in providing support.

When talking about death (whether in general or about a specific death or loss), allow plenty of time to be with the grieving person. Understanding the person’s perspective and their history and inviting their questions can help you have the discussion. You will want to watch for non-verbal cues, and be patient, present, and honest. Try to keep the person’s age, culture, and beliefs in mind. Other things that may help include involving the person in the decision-making and, if possible, inviting them to participate.

If you say the “wrong thing,” you can acknowledge it. Let the person know you are sorry and ask how your words made them feel. Keep your communication open. Listen and follow the person’s lead.

There are several ways to provide ongoing support, such as maintaining routines, having ongoing discussions about the person who died, and engaging in activities, such as going to the cemetery or doing creative activities.

In group home situations, remember to consider the impact of changes such as removing items from a room or common areas or changes in routines before proceeding.

When caregiving, you are often responding to the needs of others with empathy and care. However, unless you also care for yourself, you risk becoming overwhelmed. Your own self-care is also important, and it is a good idea to find ways to cope with your own grief if you are experiencing it.