Study shows plans lacking for future care of adults with intellectual disability

A man with Downs syndrome hugs his father

The vulnerability of adults with intellectual disability in our society has been underlined by new research showing the number of older parents ageing in tandem with their adult offspring with intellectual disability is increasing.

Caring Futures Institute researchers found that specific planning for the future care of adults with intellectual disability after the death of their parents is lacking.

While these parents realise they need to make plans for their children, their thoughts and ideas are not necessarily being voiced to other family members, nor their offspring with an intellectual disability, or exist only has vague understandings between family members.

The research, aligned with the Caring Futures Institute theme of Better Communities, comes as the world celebrates International Day for People with a Disability today (December 3).

“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,” explains Dr Ruth Walker, lead author of the research findings.

Participants in the study were recruited through disability service providers in South Australia and covered parents aged from 55 to 86 years. While some offspring were living in the family home, most were supported in accommodation.

“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,” says Dr Walker.

“Parents of adult children living in supported accommodation continued to see themselves as primary care-givers, resulting in an extended care-giving role.”

Critical problems include parents with adult offspring living in the family home, who have an underlying lack of trust in services that prevents them from pursuing out-of-home accommodation.

For parents whose adult offspring live in supported accommodation, there are particular concerns about the ability of these services to provide on-going socio-emotional and instrumental care for the adults with intellectual disability as they age.

While some parents have started to think about future care arrangements, most appear uncertain over what the future holds – and Dr Walker says it’s clear that they need assistance to make adequate plans.

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

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

At a practical level, Dr Walker suggests that services need to avoid a ‘one-size-fits-all’ approach to supporting older parents in making future plans.

“While some parents may be keen to relinquish some of their care-giving roles, others may want to retain some aspects of care that are compatible with their capacity and values as care-givers – and their future plans will need to incorporate these preferences,” she adds.

The paper – “Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability,” by Ruth Walker and Claire Hutchinson – was published in Ageing and Society (Cambridge University Press Vol. 39, Issue 7). DOI:10.1017/S0144686X18000144

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Inclusion and Disability Our Research