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.
Ms Upton also said the scheme must be protected from abuse by a small number of people using counterfeit cards.
Over 1.1 million people are eligible for the scheme, most of them aged 66 and over.
A spokesperson for the Department of Social Protection said the cost of the scheme to the taxpayer has risen by two-thirds over the past decade and now stands at €76 million a year.
Active Retirement Ireland�says any curtailment would damage the health and well-being of older people.
In a statement, CEO Maureen Kavanagh said members are fearful that if free travel is cut, their links to the outside world would be severed.
She noted that it has become popular “in certain sectors to depict older people as well-off individuals” who can easily shoulder more cuts.
She underlined that many older people are extremely vulnerable, and at real risk of social isolation.
As well as pensioners and partners travelling with them, recipients of Disability and Carer’s Allowance and of Invalidity Pension are eligible.
The spokesperson for the Department of Social Protection said the scheme provides free travel on the main public and private transport services.
These include road, rail and ferry services provided by semi-state companies as well as services provided by over 90 private transport operators.
She said the majority of these private contractors operate in rural areas.
Minutes of a meeting between officials say it poses a challenge to deliver this on time, and policies must be “resolved” to see how much can be deducted from payments.
More resources would also be required by the Department of Social Protection, the minutes, released under the Freedom of Information Act, state.
The matter was discussed when the Department of Social Protection and Revenue’s “High Level Steering Group” met on 27 September. They are set to meet again on 13 December, after the Budget.
Fr Seán Healy of Social Justice Ireland said that there is no justification for taking part of the property tax from Social Protection payments.
He said that 88% of people aged 66 and over would be in poverty without the Old Age Pension.
FATHER-OF-THREE Stephen Kinsella spent two years out of work until he finally secured a job (on a three-month rolling contract) at a local factory in May 2012.
It was happy news, especially as his wife Mary was expecting their fourth child. However, the Carlow resident would still have money worries, despite the weekly income. As a result, he discovered that he is entitled to the Family Income Supplement and applied for the payment in June this year.
At the time of application he was told it would take up to 20 weeks for a decision to be reached.
This week, the Department of Social Protection said it would be March 2013 before the application is processed.
AS a people, we are partial to ambiguity and to diplomatic speech, which allows what’s happening in Ireland today to be described as a recession. That belongs to the same category of euphemism whereby World War Two became the Emergency.
This is no recession, it is a catastrophe. Four years into the economic downturn — another of our delicate turns of phrase — the reality of austerity is blindingly visible.
For downturn read meltdown. For cutting back read cutting people no slack. For parity of pain read disproportionate pain.
Members of the troika could tour the country and pat every citizen personally on the head for taking their medicine, for all the good it would do. ‘Time’ magazine could put every last one of our government ministers on its cover.
But the outlook is bleaker, not brighter. This is not a case of people feeling the pinch, as was predicted. It is hardship. It is want. It is children in need: going to bed hungry, walking to school hungry.
The vulnerable have been suffering already — death by a thousand cuts. But now the cohort of citizens squeezed to the limits of their endurance is growing. And the approaching winter, with higher gas and electricity prices already authorised, is a source of dread.
Within relatively comfortable circles, a belief exists that the social protection system acts as a giant safety net. Safety nets are not infallible, however.
One in 10 people are living in food poverty, with lone parents and those on low incomes most at risk, according to a report from the Department of Social Protection. Those figures apply to 2010 — it’s hard to believe 2011 and 2012 won’t reveal further deterioration.
Food poverty — what a phrase to send a chill through the national consciousness. How is it possible in the 21st Century for our neighbours to be struggling with the most basic survival need known to humankind: food?
Out-of-work actor Joe Purcell told RTE‘s ‘Liveline‘ that he shoplifted groceries out of desperation, to feed his three children. He received 100 hours community service after being caught taking some basic breakfast items.
When choices are removed, playing by the rules becomes a luxury not everyone can afford. Especially where hungry children are concerned. Although Mr Purcell’s family are entitled to benefits, no system is free of error, and in this case the cheques went to the wrong address.
An unusual example, perhaps. But it’s no longer about tightened belts for many of our citizens. There are no more notches on their belts.
For four years we’ve been hearing macro-economic arguments, political arguments and moral hazard arguments, as bank debt was transformed into sovereign debt.
Now, executive level theorising has trickled down to the most fundamental reduction of all: the scramble to put food on the table. It is an ongoing challenge for a number of sectors, both those in work and those without work.
Poverty is all around us, and it is pointless carping that it doesn’t compare with sub-Saharan Africa or our ancestors eating grass at the height of the Great Famine. Any parent, in particular, who has been unemployed for a time or is on a low wage is liable to run into difficulties.
Shop in economy stores is the rallying cry from well-meaning people, citing the cost of a tin of beans from Aldi or Lidl. With the implication that only fecklessness prevents families from being fed for a few euro a day.
But what if a cut-price retailer isn’t located nearby? How does a parent relying on public transport manage to bring home their shopping, while trailing young children?
Shop-bought pizza, or fish and chips from the corner takeaway, are expensive day after day and nutritionally unsound. But not everyone has the ability to rustle up nourishing stews from scratch. Education is needed here, although the benefits won’t be immediate.
“It’s quite challenging to plan and deliver healthy meals on a budget,” said Audry Deane, who works on the St Vincent de Paul‘s society’s social justice and policy team. “Many people may not have the skills, particularly those from a disadvantaged background. Not everyone grew up with a Waltons’ lifestyle.”
Research by the Food Safety Authority of Ireland found families on social welfare had to spend a third of their weekly budget on food for a healthy diet. It also found it was up to 10 times cheaper to provide calories in the form of unhealthy foods high in fat, salt and sugar, than from fruit, vegetables, lean meat and fish.
In other words, it costs money to eat well. In all the discussion about a fat tax, aimed at deterring people from scoffing burgers and sugary drinks every day, we hear little about government subsidies for fruit and vegetables — surely a more nuanced approach.
Meanwhile, the SVP has recorded an 80pc increase in calls for help since 2009, as survival becomes a battle for an increasing proportion of the population.
We could return to eating nothing but potatoes at every meal — that’s how our ancestors survived. Or we could stop allowing society to become ever more imbalanced, with cushioned groups still largely sheltered from the consequences of fiscal adjustment.
A recession has become a catastrophe. Does it really have to be this way?
Up to 10 percent of the population experienced food poverty in Ireland in 2010, which represents a three percent increase from the previous year. The study ‘Constructing a Food Poverty Indicator for Ireland’ shows that families with children are three times as likely as those without to struggle with food poverty.
The research showed that some 450,000 people do not have the financial means to afford a meal with meat every second day or cook a roast dinner once a week. People in this category also missed at least one substantial meal over a two-week period due to lack of money.
Dr Cliodhna Foley-Nolan, director of human health and nutrition at Safefood, said the effects are both short and long term.
“The immediate effects of food poverty range from difficulties in concentration and poor energy levels in children, to wellbeing issues in everyday life for adults,” she said.
“The longer-term, public health consequences for those households living in food poverty are ill-health and higher rates of diet-related chronic diseases such as osteoporosis, type 2 diabetes, obesity and certain cancers.”
“Whether in rural towns or urban cities, the experience of food poverty is very real and damaging to the health of children and adults and also impacts on their future prospects,” he said.
“By identifying those most at risk, we can begin to work towards helping those most at need in what is a key health issue.”
Despite the high numbers, food poverty was lower in Ireland than in many European countries, including Germany, Britain, and Italy
Mr Kenny threatened to bring in new laws to force the banks hands if the Financial Regulator asked for extra powers.
The Taoiseach also said homeowners would have the use of a Personal Insolvency Bill soon.
He said if the banks did not engage with customers, then homeowners would have legislation behind them to allow debt forgiveness and writedowns.
“It’s not a case of standing by while this boils over,” he said.
Mr Kenny said the banks had been called into the high-powered Economic Management Council and told “in plain English” that they had to speed up the pace of debt forgiveness.
The Taoiseach came under pressure in the wake of one of the most senior regulators in the Central Bank criticised the banks’ attitude to the mortgage crisis.
Dealing with the banks is like dealing with troublesome teenagers, the Central Bank’s director of bank supervision Fiona Muldoon said.
She said banks were in denial about the extent of the mortgage crisis, and were refusing to come up with realistic solutions.
Earlier, Social Protection Minister Joan Burton claimed banks were keeping the cash given to them by the taxpayer for loans, rather than lending to businesses and families.
Ms Burton said the banks were given money to boost their balance sheets and allow them to lend.
She also once again hinted at a cut in child benefit payments.
The minister said she was “going to do my best” to protect basic weekly social welfare payments, such as the pension and dole.
But she again failed to say child benefit won’t be cut in the Budget.
Ms Burton said she wanted to take a look at the services available for children.
The minister spoke about school meals schemes and book loans, but appeared to rule out giving food vouchers instead of cash.
She said she preferred the taxation model for child benefit, but this wasn’t possible, and was also examining a top-up system for low income families.
“This has to take place over a number of years,” she said.
“What we need to do is the best thing that brings the best outputs to those in poverty,” she added.
An in-house group in the Department of Social Protection has recommended a cut to the €140 monthly child benefit payment of €40, with top payments for families living in poverty.
THE GAP between the State’s future pension and social welfare liabilities and revenues to fund them stands at €324 billion, according to an unpublished report commissioned by the Government, which has been seen by The Irish Times. That figure is almost twice the size of the national debt as it currently stands.
The review of the Social Insurance Fund – the pot into which about €8 billion in pay-related social insurance contributions (PRSI) go to fund a range of benefits – was commissioned by the Department of Social Protection. Last year the fund’s annual shortfall stood at €1.5 billion, or 1.1 per cent of gross national product.
Man goes on hunger strike over social welfare claim
A Killarney councillor has slammed the government over what he described as the “appalling treatment” of a local family who are seeking social welfare assistance. Cllr Donal Grady warned this week that Jan De Neubourg, who has begun a hunger strike to draw attention to his situation, could be dead within two weeks unless something is done.
Me De Neubourg (56) and his wife Claire, who live in Barraduff, have been waiting four months to see if the state will provide financial support to them.
The Belgian nationals, who have been living in the Killarney area for fifteen years, have been in serious financial circumstances since Jan’s pension from Belgium was stopped.
He says he has written to “everyone” on the issue of whether he is entitled to financial assistance in Ireland.
He has vowed to continue his hunger strike until he gets a response from the Department of Social Protection over whether he is entitled to any help from the state. He said has not eaten or drank anything since last Sunday.
The Belgian Embassy in Dublin confirmed this week that they are aware of the situation regarding Mr De Neubourg.
Killarney Town Councillor Cllr Donal Grady said that Jan is being treated appallingly by the state.
“He is an EU citizen, and they have been giving him the run-around since May. Minister Joan Burton has treated him terribly,” Cllr Grady said.
“He has done nothing wrong. They should have given him an answer by now.
“Since this government came into power I have been fighting for people every week for people to get entitlements. This was not the case previously.”
This week the Belgian native said that he will continue not to eat or drink until the government give him an answer.
“All we want is a decision on whether we can get financial assistance,” he said.
“We have written to everyone, including Minister Joan Burton, local politicians and various agencies but nothing.
“It has been four months and we don’t know what is going on.
“We have been promised every day that we will get an answer, but we don’t.
“The Department is playing games, the way they are treating people is not human.”
Mr De Neubourg, who suffers from depression and other health problems, is currently appealing against the cessation of his Belgian pension.
In the meantime the family’s only income is a small pension his wife receives.
“There is a little money coming in and friends have been very good to us, but we want the state to do what they supposed to do,” he said.
“Overnight they can decide to give billions to the bank, but they can’t make a decision on whether we are entitled to anything.”