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Ageing parents of children with disability face unique challenges

Researchers are calling for more support for older parents who are ageing in tandem with their adult offspring with intellectual disability.

Flinders University research Dr Ruth Walker said: “Parents are not only having to deal with their own ageing issues but are also providing a high level of support to their adult children with intellectual disability, regardless of whether they live in supported accommodation or the family home.”

To find out more about this group of Australians, the research team recruited parents aged from 55 to 86 years with children either living in the family home or in supported accommodation.

The team found that parents with adult offspring living in the family home may have an underlying lack of trust in services that prevents them from pursuing out-of-home accommodation.

And for adult children who do live in supported accommodation, there are concerns about the ability of such a service to provide ongoing support and care for the adults as they age. Walker added that parents of adult children living in supported accommodation continued to see themselves as primary caregivers, resulting in an extended care-giving role.

She and her team added that specific planning for the future care of adults with intellectual disability after the death of their parents was lacking.

“While most parents of adults with an intellectual disability were aware of the need to plan for the future, the majority did not have a firm plan in place,” Walker said

Instead, many of the plans parents create existed only as vague understandings between family members.

Walker said it was clear that these parents need assistance to make adequate plans.

“Assisting or encouraging parents to put some firm plans into place for the future may help to alleviate the emotional and practical day-to-day demands they face as ageing carers,” she said.

“It will also be beneficial for their family member with intellectual disability in the longer term by avoiding decisions at a time of crisis.”

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