Parents say: “Who will care for our children?”
by Kirsty Stein, The Senior, Victoria – May 2013
Older parents caring for adult children with disabilities continue to be placed under growing pressure as services fail to answer who will care for their children when they are gone.
An Australian Institute of Family Studies report commissioned by Carers Victoria shows about 60,000 people aged over 65 are living with and caring for an adult son or daughter with a disability.
With more than 60 per cent of the country's 600,000 parents caring for a disabled child aged 35-54, that figure is set to climb significantly.
The value of services provided by informal carers exceeded $40 billion in 2010.
The estimated number of ageing parent carers of people with a severe disability almost tripled between 2003 and 2009, from 6400 to nearly 17,000.
The report, Ageing Parent Carers of People with a Disability, found while parents who had devoted a lifetime to caring for their adult child would like to plan for the future, they often were exhausted and confused by a complex system or could not access necessary services.
Planning services that are available are not linked to funding to assure people of secure housing arrangements for their child with a disability.
The study reiterated the findings of the 2011 Federal Senate disability and ageing inquiry which urged the creation of more interconnected and co-ordinated services for ageing parents and their children.
"With improvements in health care services and community support, people with a disability are likely to live longer and are more likely than in the past to outlive their parents," it said.
One in 10 father carers and nearly one in five mother carers over 65 were living on family incomes of less than $500 a week and, in general, the older the carer, the lower the financial resources.
Parent Lynn Loft, who spoke at the launch of the research in March, said she knew carers who had eventually relinquished their child to care after their pleas for help were ignored.
"One mother had a very high needs child and she was asking for a night's respite a week just to recover, and another 10 hours a week help," she said. "This is a very loving mother who had cared for her child all her life.
"Eventually when her daughter went into a house the mother couldn't believe it, because her daughter was allocated two carers who were with her all the time and they said one carer wouldn't be able to deal with her needs."
Mrs Loft said hundreds of thousands of dollars could be saved if flexible services were available to support older carers who wanted to continue to provide a home for their children and offer opportunities for them to remain in their own homes with family carers if they outlived their parents.
"For example why not pay $40,000 a year to a sibling or in-law who is willing to live in your house and care for your disabled son or daughter?" she said.
"They would spend $85,000 a year putting the person in a community residential unit, and more because that person would be happier staying in their own home and there would be fewer problems."
The Senior - Editorial Comment: Being a parent is exhausting, and most feel a sense of relief when their children reach adulthood and take some responsibility for their own life.
For people like the Loft family and about 18,000 older parent carers around Australia, that relief never comes. They are on call 24 hours a day to cater for adult children with disabilities whose needs often become more complex as they age.
Lynn Loft has bravely spoken of her desire that her son Paul not outlive her. It's a wish no parent should have to voice, but it is born from the knowledge that there is no ability to plan a future for her son - the funding and the services are not available.
It's regrettable that caring parents seeking extra help, many of whom have previously not sought assistance, are being turned away because of a lack of funds.
Surely some flexible thinking is called for. A little more help now and a plan for the future will set their minds at ease, and lead to better outcomes for them and their children.
LISA Comment: Bureaucrats have tinkered at the edges and re-named what has always been known as ‘Unmet Needs’ or the ’DSR Waiting List’.
Call it what you will, it is ageing parents expected to live and provide care forever – never to experience their golden years without a caring responsibility.
The NDIS was intended to reduce the waiting list for those families seeking a supported accommodation group home or similar for their family member.
With NDIS watered-down to little more than a shadow, there is little hope for those seeking more than a few hours of day service from the NDIS.