State aid out of reach for many full-time carers

The long-term illness of an elderly family member is not a prospect that many people like to think about and, when they have to, the emotional drain often relegates some practical considerations into second place.

But when people suddenly find themselves in the role of carer for a relative who requires full-time assistance, the unexpected drop or total loss of family income can leave them struggling to cope financially.

According to Care Alliance Ireland, there is a 50 per cent chance that a person will require care at some stage.

Therefore, it is little wonder that financial advisers regularly stress the importance of building up an emergency savings fund for family crises.

But many people cannot afford to put all that much aside for the future, while others find that their rainy day fund evaporates all too quickly in the face of mounting, ongoing care costs.

State payments, like the carer's allowance and the carer's benefit, can provide a safety net for family carers.

However, strict eligibility rules mean that only around 16 per cent of carers receive either payment.

The 2002 census revealed that there are almost 150,000 people caring for family members in their homes, of whom 50,000 are doing so full-time.

Figures from the end of January 2005 show that only 23,234 people are in receipt of the means-tested carer's allowance, while just 681 receive the short-term carer's benefit payment.

"The way the carer's allowance is structured is that it is not a payment for the work the carer does in their homes.

"It is only seen as a supplement to keep people off the breadline," according to Enda Egan, chief executive, the Carers Association.

The maximum weekly sum payable to a carer looking after one person is €153.60.

What takes many full-time carers out of the carer's allowance loop is the fact that their spouses' incomes are also included in the means-test assessment, while the "dual eligibility" rule means that people already in receipt of one social welfare payment, such as an old-age pension or lone parent allowance, also do not qualify.

The Carers Association and other support groups for carers have repeatedly called on the Government to abolish the means-testing requirement for the carer's allowance and several reports, most recently the Joint Oireachtas Committee on Social and Family Affairs, have also favoured its abolition.

According to Egan, full-time family carers should be given an equivalent payment to the cost of employing home help carers through the health service. At the very least, he says that the payment should be increased, so that it is in line with the nursing home subvention payment, which gives a maximum of €190 a week toward the cost of nursing home care.

Carer's benefit, which has a maximum rate of €163.70, is not means-tested and is payable to people in paid employment who avail of their statutory entitlement to carer's leave. But the payment - and the right to leave - expires after 15 months.

This is much shorter than the five-year average amount of time spent caring for someone, Egan points out.

"Once your care duty goes over that time, you don't get it anymore. Perhaps you could apply for the carer's allowance, but the chances are you won't be eligible."

Eileen McCaffrey, development manager for Age Action Ireland's carer support services, says that there is a wide group of people who are deemed ineligible for the carer's allowance, but who still struggle financially.

"If you had two incomes coming in the family and an elderly person suddenly requires constant care, you might give up your job to stay at home. So you have already cut your income in half, but the income that's left goes over the amount at which you would receive the carer's allowance," she says.

Meanwhile, the family's outgoings may go up.

"If an elderly person feels the cold and can't generate their own heat, you can have your central heating running long into the summer and overnight," says McCaffrey.

The person being cared for may also have special dietary needs, while incontinence problems could require the purchase of a washer-dryer.

Age Action runs training sessions for new carers, who often don't know the right questions to ask and where to turn for help, she adds.

One change that could make a difference to many families is the extension of the respite care grant. Up to now this payment, worth €1,000 in 2005, has only been paid to people who qualify for the carer's allowance or carer's benefit.

But from June it will be widened out to all people providing full-time care to an older person or person with a disability, subject to employment-related conditions.

"There are other grants that you can look for, but sometimes people are afraid to ask, because they don't think they are entitled to them," says McCaffrey. "Older generations are more reluctant to ask for help than younger people," she believes.

"For example, if somebody has a medical card, then they are eligible for funding for any equipment they need through the public health nurse, and it's the same for house extensions and alterations if they need to put in a downstairs bedroom or bathroom."

Home adaptations can be a big issue for people, says Egan.

"They might be approved for a grant to get their home adapted, but then told that the budget is gone and they could have to wait two or three years," he says.

The Carers Association wants people who can afford to pay privately for home adaptations or equipment to be able to offset their expenses against taxable income.

The association is also seeking the introduction of a family carer's tax credit, a medical card for all carers and the development of a national strategy for carers.

"At the moment, it's very piecemeal. You don't know from year to year what you are going to get," Egan says.

Sinking finances can force people into making decisions they don't want to make.

"Traditionally, care in the home was always provided by women. But since 1985, there are 20 per cent more women in employment," he notes.

"When you link that into other social changes such as the general cost of living - trying to pay a mortgage and put a bit more than bread on the table - it is generally two incomes that are required in most families."

Younger women don't fall into the unpaid de facto carer role quite so readily, while people "sandwiched" between frail, elderly parents and the needs of their own children may find it financially more viable to remain in employment and use their salaries to pay for care, rather than take decades out of the workforce.

But although most people in need of care prefer to receive that care in their own homes, community home help services provided by volunteer groups are already "pretty well stretched", according to McCaffrey, while health service subvention schemes for home-based care are currently somewhat ad hoc, according to carers' support groups.

A number of pilot home-based subvention schemes are in operation and more are scheduled to come on stream, but there are different rules for different areas, says Liam O'Sullivan, national development officer for Care Alliance Ireland.

Some regions within the new Health Service Executive give payments to people directly, while other regions give it to support organisations, which then allow people to purchase a certain number of hours of home help care.

"To be honest, it's a bit of a mess, and it is the uncertainty that causes anxiety for people," says O'Sullivan.

"At the moment, they're thinking, if I shout hard enough, what help can I get? If I'm in the right catchment area, what help can I get?"

What many families are looking for are affordable home help support services that would enable them to return to their jobs, either on a full-time or part-time basis, if they choose.

"Really, people should have some degree of choice, but they have very little choice at the moment," he adds.