Lack of sleep, no holidays and now less money: how the cuts affect full-time carers

The carer’s payment cut is immoral, says a mother who cares for her disabled child

Bébhinn is 15 but has the needs of a six-month-old.

She can’t speak or move much, apart from clutching on to a baby’s bottle. She’s visually impaired and is prone to epileptic fits. In all, she’s on nine forms of medication. And, in the words of her mother, “she’s absolutely gorgeous”.

“Caring for her is the only option,” says Aoife Thornton, a single mother of two from Blackrock, Co Dublin, who is a full-time carer for her disabled daughter.

“I don’t want her institutionalised. All children should be able to live with their families. I was more than happy to give up work to look after her, even though it’s exhausting.”

Grant ‘vital’

It has been four years since Thornton was able to get a weekend break from her role as a carer.

After this week’s budget, she says she has little hope of getting a break in the near future.

The annual respite care grant – paid to about 70,000 families each year – is being cut by €325 to €1,375. The grant allows carers to buy additional supports as part of a package of care and support for all family members.

“For me, the grant is vital to managing my family’s existence,” says Thornton.

“I’m stunned that carers have been targeted in this manner. . . most of us go around in a state of permanent exhaustion. We’re at a bigger risk of ill-health and stress. We’re saving the State money. And this is how we’re rewarded. This is digusting and it’s immoral.”

It’s a sentiment shared by lobby groups such as Inclusion Ireland, an umbrella organisation which represents people with disabilities and their advocates.

It is calling on the Government to reverse the cut – which will save €26 million, or 6.6 per cent of welfare spending reductions next year.

“The absence within Government of any knowledge of the real cost of disability to inform budget decisions means families of people with disabilities are feeling increasingly alienated by this Government,” Paddy Connolly, chief executive of Inclusion Ireland said.

“This was evidenced when up to 5,000 disability protesters marched on Leinster House last month.”

Calls for reversal

Opposition parties are also lining up to pressurise the Government into reversing the cut. Fianna Fáil yesterday insisted the cuts could have been avoided by increasing tax on the wealthy, while Sinn Féin said it breached decency and should be reversed immediately.

Even some members of the Government began to sound uneasy about the move. Brian Hayes, Minister of State, acknowledged the grant was a “drastic one” for those who depended on it.

Senior Government Ministers, however, continued to defend the decision last night.

Minister for Public Expenditure Brendan Howlin said core welfare payments had been preserved and that the the carer’s allowance – worth up to €229 a week – was one of the “most generous” welfare payments.

He also said the cuts to the grant meant it was still ahead of the €1,200 payment that applied in 2006 when the economy was at its peak.

But for carers like Anne Thornton, those defences sound hollow. Her day begins at 6am and ends at 1am. She sleeps with a baby monitor, in case Bébhinn needs attention during the night, as she often does.

“Carers are the only full-time social welfare recipients who are working for their welfare payment. We’re saving the State significant amounts of money,” she says.

‘Worsening lives’

“Most carers are permanently exhausted. They’re at greater risk of ill-health, because of all the exhaustion and stress. Getting some sort of break from caring is vital.”

Even if respite care was affordable, it’s not always available. Spending cuts mean her local service provider in Glenageary has had to cease providing respite care during the week. It’s often booked up solidly for months on end.

“When you make carers less well-off, you’re not just worsening the lives of carers,” Thornton adds.

“It impacts on the lives of the sick and disabled people they’re caring for . . . So how can the Government continue to claim it’s protecting the vulnerable?”