People with intellectual disabilities will be more involved in essential end-of-life conversations with the help of a world-first online resource.
The project titled Talking End of Life (TEL) is a research-based online toolkit, designed to support staff and carers in discussing the concept of death and mortality.
It was created in response to a decade-long Australian study which found people with intellectual disabilities are often left out of discussions around death and dying in fear of upsetting the person, assuming they will not understand or carer discomfort in explaining mortality.
Talking End of Life was created by Unisson Disability and CareSearch, in partnership with the University of Sydney, Western Sydney University, health care provider HammondCare and Flinders University.
Matthew Bowden, Co-CEO, People with Disability Australia sees the initiative as a way to reduce the stigma and discrimination that people that intellectual disability experience in discussions of grief and death.
“For many people, excluding them from the ordinary life of their friends and families can infantilise them and is deeply disrespectful. This also cuts people with intellectual disability out of support, conversations and activities that are about honouring their feelings with the people close to them,” he says.
Over the years, Mr Bowden has worked with people with intellectual disability to develop the communication support they need to understand what is happening with themselves or a loved one.
“Work like this is vital and so important so that people can have their own beliefs, or religious rituals that are important to them. This also allows people to pay tribute to the people they know and care about and connects them to a human experience that we all have.”
“The collective experience of grief is important for everyone, including people with disability. We have to make sure that everybody is included, no matter the nature of their communications skills – loss is loss and grief is grief,” he says.
Gail Jeltes, General Manager for Client Services at Unisson Disability is excited to see how this project will benefit the Australian community.
“People with intellectual disability already make important decisions about employment, relationships and living arrangements. So, with assistance, they can be supported to understand and plan for death and dying,” she says.
Talking End of Life is funded by the Australian Government Department of Health and consists of 12 modules detailing topics on the concept of death, funeral wishes and inheritance.
For more information on disability support and services, please visit DisabilitySupportGuide.com.au