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What €325 cut means for one boy with autism


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

ANALYSIS PAGE 28

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.

via What €325 cut means for one boy with autism – National News – Independent.ie.

via What €325 cut means for one boy with autism – National News – Independent.ie.

Hogan feels heat on return from €30,000 trip


download (9)Desert mission’s costs could have reversed cut in respite care grants for 92 families

MINISTER for the Environment Phil Hogan has swapped the searing heat of Doha for the chill winds of home, returning today from a week-long trip that is expected to cost close to €30,000.

The bill is enough to reverse a €325 cut to the €1,700 respite care grant – introduced by last week’s Budget while Mr Hogan was in Qatar – for 92 families.

Mr Hogan and his ministerial entourage of nine spent a week at the UN talks toiling at back-to-back round table sessions, bilateral meetings and political briefing.

But the lasting image of the jaunt will be the Irish Daily Mail‘s pictures of the minister relaxing over drinks in his five-star hotel bar with his press adviser Yvonne Hyland, a former Fine Gael press officer.

The photographs were published on Budget Day, hours before the public was to discover the extent of the tax increases emanating from his department on cars and homes. They were reportedly taken at the end of a long day of back-to-back meetings.

Meanwhile, the burdened citizens back home who are paying for Mr Hogan’s trip were counting the cost of his latest austerity measures.

For a Government bent on selling a message of austerity, the timing was poor. The department said the costs of the trip came to €5,000 for flights and €16,000 for hotel accommodation. On top of the cost of flights and accommodation, the group of 10 would be entitled to claim foreign subsistence rates intended to cover any food, drinks and other costs incurred by Mr Hogan and his civil servants while abroad.

Daily subsistence of about €100 over seven days adds €7,000 to the bill, bringing the final cost closer to €30,000.

Although the sum is relatively modest in the scheme of Ireland’s debt problems, €30,000 is enough to reverse the €325 cut to the €1,700 respite care grant for 92 families or to extend the newly-cut €1,375 grant to an additional 21 families.

The department said it had “no response” to the publication of photographs last week showing Mr Hogan and Ms Hyland relaxing over a drink.

One of the few TDs to query Mr Hogan’s absence

ANALYSIS PAGE 28

from the Dail on Budget week was Sinn Fein’s Aengus O Snodaigh.

Mr Hogan and his ministerial entourage were in Doha to bone up on international environmental issues in advance of Ireland’s assuming the EU Presidency next month.

He was accompanied by his private secretary, Eddie Kiernan, Ms Hyland, and John McCarthy, the assistant secretary at the department’s environment division. Six other officials were also in the group but his department did not name them. Some of the party travelled in advance, no doubt to get in early to prepare the ground. They flew economy on flights from Dublin to Doha via Abu Dhabi – at a cost of around €500 each.

“The numbers attending (Mr Hogan and nine officials) on the department’s part are being kept to the minimum necessary to allow us to be able to cover multiple parallel tracks of meetings and to prepare us for the Presidency role that we will have to discharge from January to June, including leading for the EU at an inter-sessional meeting in Bonn,with the possibility of a second inter-sessional also being mooted,” a Department spokesman explained.

Mr Hogan and his officials stayed at the Kempinksi Hotel in Doha, which offers a range of luxury suites and “sky villas” with “Arabian sun peaking through the floor-to-ceiling windows.”

But far from living it up in solo luxury, the department staff doubled up to save money. A spokesman said they shared “what are, in effect, two-bedroom apartments”.

Mr Hogan, meanwhile, had what the department called his own “one-bedroom unit” but which was reportedly one of the suites touted by Kempinski on its website, on the 49th floor, complete with four bathrooms, a kitchen and panoramic sea views.

“In both cases the accommodation is the cheapest of three available categories of accommodation in the hotel,” the spokesman said, coming in at a relatively modest €149 a night

Although Qatar governs itself according to strict Sharia law, luxury hotels are allowed to sell alcohol to non-Muslims.

The department claimed the delegation was among the smaller groups attending the international conference. Almost 200 nations attended the climate change talks which were aimed at negotiating a new international treaty on reducing greenhouse gas emissions by 2015. Mr Hogan will be the minister leading the EU’s work on climate change when Ireland takes over the EU presidency in January.

And it was necessary to send nine officials to various parallel meetings going on at any one time.

During the seven days, Mr Hogan gave one three-minute address to a UN plenary session in which he spoke about the need for urgent action on climate change.

He also promised delegates “an ambitious environmental agenda” when Ireland takes over the Presidency of the European Council in January.

According to a schedule released by his department, he spent much of the week attending daily co-ordination meetings with 27 EU ministers; bi-lateral talks with EU ministers and the UN; ministerial round-table talks; and multiple “bilateral talks” with small island states, with Russia and with “least developed countries” and with non-government agencies.

He also attended a ministerial breakfast hosted by Mary Robinson

via Hogan feels heat on return from €30,000 trip – National News – Independent.ie.

via Hogan feels heat on return from €30,000 trip – National News – Independent.ie.

60 families left in limbo » Laois


SIXTY families with children who have special needs, some with high dependency issues, have been left in limbo with the closure, without notice, of the adult respite service in Fountain View, Abbeyleix.

Ballacolla woman Kathleen Walsh dropped off her 29-year old daughter Clare at the centre last Saturday week only to be told by staff that it would be Clare’s last stay.

No notice was given to families by the HSE funded Muiriosa Foundation, which runs the centre.

“We got no letter, only told last weekend,” said Ms Walsh. Last Sunday week, as Clare left, the adult respite centre’s beds were already being dismantled.

Clare had been attending the adult respite centre a few times a year for over ten years.

She benefited from time out of the house with her friends and visits to the cinema among other activities.

via 60 families left in limbo » Laois Nationalist.

via 60 families left in limbo » Laois Nationalist.

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