By taking care of sick and elderly relatives themselves, carers save the State an estimated €1.9 billion per year but many of them are still not adequately compensated for their efforts, writes Clare O'Dea

Many carers are in poor health themselves due to the physical and emotional effects of long-term, high-level care.  There are more than 35,000 children in the State with very severe disabilities, more than 30,000 people with dementia, more than 10,000 people disabled because of strokes and more than 50,000 frail older people in need of high-level care. Who looks after these citizens 24 hours a day, seven days a week? In 90 per cent of cases the care is provided at home by family carers.

Family carers provide very high levels of care at home for children, older people, those who are terminally ill and people with long-term serious illnesses. The carer's life centres on the needs of the person needing care. He or she must be constantly available because of the demanding nature of social and health care needed at home, and in case of emergency.

Carers do not feel sorry for themselves, they do not have the time for self-pity. They do what they do out of love and duty, and sometimes because they have no choice.

The Carers Association finds that many carers are in poor health themselves due to the physical and emotional effects of long-term, high-level care.

The association estimates that each carer saves the State at least €380 per week on alternative residential care. Depending on the level of nursing care required, alternative care by the State may cost more than €1,200 per week. By taking the work on their own shoulders, carers are saving the State an estimated €1.9 billion every year, the association says.

So these round-the-clock carers must be paid something for their efforts, right?

It would be natural to assume they are entitled to some State payment in recognition of their work and to compensate for the fact that they cannot take up paid employment.

Perhaps there is an additional payment for the extra costs of caring for someone in the home and some kind of protection against poverty. The answer is not quite.

The Carer's Allowance is a means-tested social welfare payment for carers on low incomes. Some 20,000 carers are receiving this payment - that's one in six carers, the Carers Association says.

Either five out of six carers are so well off that they don't need and wouldn't miss the €122.60 weekly payment, or they are being undervalued by the State.

The other carers' payment is the Carers' Benefit. It is a payment made to people with a certain level of PRSI contributions who leave the workforce to care for a person in need of full-time care and attention. The benefit is paid for up to 65 weeks.

One of the central planks of the Carers Association campaign on behalf of carers has been a plea for the abolishment of the means test for the Carers' Allowance. Other related groups, such as Care Alliance Ireland, have called for the same thing.

Following three years of consultation, the Commission for the Status of People with Disabilities published a report recommending that a carers' allowance should be paid to all carers looking after people who required full-time care.

The report said that any means test should be related to the carer's means only and should not include those of his or her spouse or partner.

The Progressive Democrats (PDs) seemed to agree with this argument and sums it up very well in its pre-election manifesto.

"There are thousands of people in this country who devote a large part of their lives to caring for sick or elderly relatives. They make huge personal sacrifices to provide an essential service which would otherwise require very substantial Exchequer funding," it said.

The PD manifesto added that the party was committing itself to new measures to recognise and reward the role of the carer in Irish society.

Chief among these measures was the commitment to abolish the means test for the Carers' Allowance to ensure every carer was entitled to a full allowance in his or her right.

The picture was slightly different in the Fianna Fáil pre-election manifesto. The section on disability and caring begins with "Fianna Fáil believes that every individual should be helped to develop to their fullest potential".

The party pledged to improve the Carers' Allowance "so that all carers whose joint family income is at the average industrial wage will qualify for the Carers' Allowance at the full rate".

The Fianna Fáil position is what made it into the Programme for Government published last week so there is no official aspiration to abolish the Carers' Allowance means-test over the next five years.

Mr Enda Egan of the Carers Association said the continuation of the means test was extremely disappointing for carers.

"We as an organisation had a pre-election campaign and held meetings with family carers and Dáil candidates in every constituency. Every single candidate seemed to agree and understand how important it was but sadly this has not been reflected in Government policy."

Mr Egan welcomed some aspects of the Programme for Government, including the commitment to implement significant increases in the value of the respite grant for carers. However, he said this grant would only be paid to the minority of carers, those who are receiving the carers' allowance or carers' benefit.

The new Government has also pledged to complete the work of the group examining the introduction of a costs of disability payment.

Mr Egan was somewhat encouraged by this but concerned that no time frame had been mentioned.

"We are very anxious to see the introduction of a costs of disability payment to avoid poverty among carers, but the reference to it in the programme is a bit foggy," he said.

Mr Egan said he would need to find about more about the introduction of a new Home Subvention scheme before he could make a judgment.

"It looks like they're going to tinker around with that but again it's quite wishy washy."

The Programme for Government also states that it will "consult on other options for assisting families who may wish to make long-term provision for a person with a disability."

Perhaps there will be something in that to give carers a boost over the next few years, perhaps not. In the meantime, the majority of carers will continue with their unpaid job for as long as they can.