*This story is based on real-life, but details are modified to protect individual’s privacy

Dani’s* mum died 7 years ago of a dementia-related illness. Dani was told by her dad that she wasn’t allowed to come along to the funeral. Dani was about 40 years old at the time and lived in supported accommodation in Sydney with other people who like her, have an intellectual disability. She accepted her dad’s decision, but the memory of that time lingered. In subsequent conversations, she referred to this memory as ‘it hurt, big time’.

Is it right that Dani was not allowed to go to her mum’s funeral? If Dani didn’t have an intellectual disability might the story have been different?

Having an intellectual disability means that a person may struggle to understand, remember, and learn. Sometimes those who know a person with intellectual disability may try to protect them from the tough parts of life – dying and death is one of the toughest. But imagine for a moment what happens if you try to protect someone from this experience every single one of us faces. Imagine if you, like Dani, didn’t get to go to your mum’s funeral to say goodbye when you really wanted to. Imagine if a good friend suddenly died and you never knew. Or, imagine if you had a life-limiting illness and you weren’t told. Presumably, you would be very upset, angry and in Dani’s words, ‘hurt, big time’! Imaginings like these are not an uncommon reality for many people with intellectual disability.

People with intellectual disability, just like everyone else, have a right to understand dying and death. But helping a person who struggles to understand, remember, and learn is not easy, especially with the challenging end-of-life topic. So how to help?

The website Talking end of life…with people with intellectual disability (TEL) offers practical guidance about how to assist people with intellectual disability to understand the end of life, and make plans for it if they choose. TEL comprises 12 modules on topics including what death is, funeral wishes, and bequeathing. Each module contains individual stories, video examples, practical tips, resources, and links to available research that underpins the content.

The TEL website content meant that the disability support professionals who supported Dani developed the knowledge, skills and confidence to explain everything about her mother’s death and then to accompany her to visit her mum’s grave. Dani felt great relief knowing finally where her mum was, laying flowers, and saying goodbye. The disability support professionals too felt like they honoured both Dani and her mother by enabling this reunion.

While TEL is designed with a focus on the disability profession it is equally helpful for families, educators, and allied health professionals who want to engage with a person with intellectual disability about this topic.

The development of TEL resulted from a partnership between the University of Sydney, Western Sydney University, HammondCare, Unisson Disability and Flinders University. The project was funded by the Commonwealth Department of Health under the Public Health and Chronic Disease Grant Program. The TEL website is maintained by CareSearch.

Useful resources

1. Books beyond Words series. These are books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the client. Topics include ‘Am I Going to Die’ and ‘When I Die’. Available at https://booksbeyondwords.co.uk/bookshop
    
2. Wiese M, Stancliffe RJ, Read S, Jeltes G, Clayton JM. Learning about dying, death, and end-of-life planning: Current issues informing future actions. Journal of Intellectual & Developmental Disability. 2015 Jan; 40(2), 230-235. This article discusses the importance of talking to people with intellectual disability about end of life, including their right to know about death.
   
   Please contact Dr Michele Wiese at m.wiese@westernsydney.edu.au if you would like to access her published research on this topic.