Disability services need to help the families of children with an intellectual disability plan for the day when their parents are no longer there, a researcher says.
“The increased life expectancy of people with intellectual disability (ID) over recent decades means that many older adults with ID are now outliving their parents,” says Ruth Walker of the College of Nursing and Health Sciences at Flinders University.
“While this notion has been recognised and highlighted in the academic literature for decades, studies from countries including the USA and UK find older parents are not proactively developing future care plans.”
Dr Walker and her colleague Claire Hutchinson investigated whether this was reflected in Australia by surveying parents recruited from a South Australian disability service.
The parents were aged between 55 and 86 and had children living in supported accommodation or the family home.
While most parents were aware of the need to make future plans, the majority didn’t have a plan, the researchers found.
“Overall, we found that the majority of our participants did not have firm plans in place,” Dr Walker told Community Care Review.
Mistrust of services
Dr Walker said many parents have a deep mistrust of out of home care, which discourages them from looking for out of home options for their children when they are no longer there to care for them.
Parents with adult offspring living in supported accommodation also expressed fears about the ability of the services to provide long-term socio-emotional and physical care for their children as they aged, and saw themselves in an ongoing care role.
“They tended to have an almost ‘blind faith’ in service providers that their son or daughter would be able to remain there as they aged,” she said.
“Others realised they needed to make a plan but felt anxious about it or were waiting for the ‘right time’ to talk to other family members.”
Dr Walker said some of the parents surveyed felt service providers hadn’t been proactive in discussing future care arrangements, although she noted the research was done at the time of the NDIS rollout, before parents had started the planning process.
Role for NDIS planners
Dr Walker says services can help ease some of the stresses carers face by helping put plans in place and removing the need for an on-the-spot decision at a time of crisis.
“There is certainly a role moving forward for support co-ordinators/NDIS planners to take a proactive role in discussing with older carers and their family member with ID about their future plans for support and care and facilitating supports to bring these to fruition,” Dr Walker said.
She says it’s a question she would like to see canvassed by the Royal Commission into Aged Care, as better planning could reduce the flow of young people with disability into residential aged care facilities, an area of concern highlighted in the interim report.
“I would love to see this issue being brought to the attention of the Royal Commission,” Dr Walker said.
“It is a real concern of older parents that their son or daughter will end up in aged care when they are no longer able to care for them, and anecdotally we know that this is happening to the detriment of the person with ID.”
Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability, by Ruth Walker and Claire Hutchinson, is published in the journal Ageing and Society.