The respite care grant is soon eaten up by the costs associated with having an autistic child, writes Maeve Sheehan
IN the corridors of power, the fight to reverse the cut to the respite care grant has moved on to dissent in the Labour Party and whether its leader Eamon Gilmore is in trouble. In the real world, meanwhile, thousands of families will be sitting down with pens and papers and bills to figure out what impact the Government decision to cut €325 from the €1,700 grant will have on their lives.
The grant means different things to different families. It's paid out in one lump sum, usually in June, to all registered carers. The payment is supposed to be in lieu of residential services to relieve those providing round-the-clock care to loved ones. Deirdre O'Driscoll, chief executive of Care World, provider of care and respite services to families and the HSE, said the reduced grant of €1,375 will buy one week's live-in respite care (€1,025) with enough left over to buy extra care hours, which cost roughly €25 an hour.
"This is not simply a cheque that goes into a private care company. It is more of an integrated approach where the family comes up with a solution that's best for them," said Deirdre O'Driscoll. "They may not be purchasing home care with that grant. They may pay lump-sum bills."
It's basically up to families to choose how to spend the money. For one Galway family, the respite care grant means two hours' extra therapy every week for their profoundly autistic son.
Cianan, 8, is the second youngest of Niall and Niamh O Brolchain's five children. With an intellectual disability such as autism, the more training and therapy a child can get, the better his chances. "We do everything we can to help him," said Niall O Brolchain.
The family have five children aged between five and 19. Niall is a former Green Party
councillor and Mayor of Galway, and was briefly a senator – although not for long enough to qualify for a pension. He left politics after the last election to set up his own e-commerce business, and is doing a postgraduate course in digital marketing.
Niamh is a full-time carer to Cianan, who needs 24-hour attention, and is a recipient of the carer's allowance and the means-tested household benefits package that contributes to the costs of phone and heating. The O Brolchains count themselves lucky in that Cianan attends a local school where teachers are trained to care for children with autism, and has an assistance dog, a Golden Retriever, who has made an immeasurable difference to his life. Even with the speech and occupational therapy he gets at school, Cianan still needs more.
The O Brolchains pay either €30 or €40 an hour – depending on the qualification of the tutor – for a two-hour session at home each week. The cost of those two-hour sessions over a year comes in at a minimum of €3,000. So it's easy to see how the €1,700 respite care grant would be eaten up.
There are other costs on top that again, the kind that come with having a profoundly autistic child. The cost of cleaning walls; of repairing or replacing household goods that have been smashed; of regular visits to the doctor for illness or injuries, self-inflicted or otherwise.
A child with autism can be "extremely disruptive" to a family, said Niall. "I know in lots of other areas of care it's difficult too but autism can be very disruptive at times. As somebody put it recently, a lot of autistic kids are frightened of everything at certain stages of their lives. The merest change of routine can cause havoc, [leading to behaviour such as] throwing things on the ground.
"On an average day, you will have 10 to 15 per cent of the stuff you buy in the shop each week ending up on the floor. Things like flour, jam, we'd buy a number of cartons of orange juice and we'd find that he's poured them all into vinegar or something. . . and he'll very kindly come around to everyone in the family and offer it to us."
The constant watchful caring doesn't stop at bed time, either. For years, Cianan didn't sleep. "It impacts on the family in a very, very big way. Anyone with autism will tell you a similar story," said Niall.
Their son's condition also takes its toll on their life as a
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couple. "We can't have a normal babysitter. We hardly ever get out. It is very expensive to arrange holidays or going anywhere. We rarely do," he said.
The family is down €1,500 a year since the Budget, between the cuts to the respite grant, child benefit and cuts to the household benefits package.
But the money spent on Cianan's therapy and his education has made an enormous difference to himself and his family. For a child who did not speak until the age of five, he not only attends Abalta special school but is also able to go to Galway Educate Together national school for a few hours each week.
What the O Brolchains ask politicians to remember is that the respite grant is not just a hand-out – it is paid to families because the State services to look after their loved ones are inadequate. "The respite grant is given in lieu of services because they don't have enough respite to cater for every person who is entitled to it in the country," said Niamh.
Parents of children with autism are paying out a hell of a lot more money than is coming in from the Government. "It really isn't close to enough to giving them the kind of care they need," said Niall.
"What is much more useful is to have proper respite care services in the first place, where people can step or there are properly managed places where you can bring your child and there will be people on hand to deal with that. Then you wouldn't need the grants."
The Department of Social Protection has argued that the cut to respite care will save €26m, at a time when the core pay of carers has not been touched, that the numbers of people qualifying for benefits is rising, and all of this is contributing to the drain on the public purse.
The most recent survey on how families use the respite care grant is six years old and way out of date, in terms of the economic climate in which carers now live.
The survey of more than 2,000 carers found that more than one in four families used the grant simply to cope with their day-to-day financial expenses. After that, about 16 per cent of carers used the money to take a holiday while only 6 per cent of those surveyed used the money to buy in respite care for their loved one. At the time of the survey, the respite care grant was €1,200. (It was increased to €1,700 in 2008.)
But times have changed. During the wave of protests outside Leinster House since the cut to the respite care grant was introduced, family after family spoke of using the money to pay heating or electricity or food bills.
According to carers groups, using the money to fund actual physical respite care for your loved one is at risk of becoming a luxury in itself.