Care is heavy, therefore sleep you,
You are care, and care must keep you;
Carers are angry. That was the main message I took away from the National Conference on Carers which took place in the Hodson Bay Hotel in October 2000- They’re tired of being nice people, of being patted on the back by politicians. Everyone knows their hands are tied. They can’t go on strike when withdrawing labour could mean no food, no personal services for an old or disabled person.
In Athlone they were angry with Minister Martin, who didn’t turn up. (He had a bona fide caring reason – the birth of his son.) Then they were angry with his replacement, Minister of State Tom Moffatt, who showed signs of moving too smartly towards the exit after his opening address. The carers weren’t having any of that. They queried him on his rosy picture of improved state support. ‘How many people are getting the Carer’s Allowance?’ one man asked. The answer was about 14,000- ‘And how many carers are there?’ he continued. An estimated 120,000- This statistic gave the annual tinkering with the Carer’s Allowance a hollow sound.
The main problem with the Carer’s Allowance is that it’s not really an allowance for care at all; it’s a direct descendant of the Prescribed Relative’s Allowance which was introduced to provide a basic income for those who stayed at home to look after parents (often on a small farm), and who did not have any social insurance but did not really fit the unemployed category. If a person who already receives a social welfare benefit, such as a Widow’s Pension, is awarded the Carer’s Allowance, he/she loses the other benefit. This is deeply resented by many older carers, who feel that the contribution they or their spouse made in paying social insurance is thus devalued.
So why is there no payment for care? We all need it at one stage or other of our lives; and at those stages we are usually unable to pay for it directly. While we may bewitch our parents into providing free care, the Great Childcare Debate has demonstrated that this doesn’t come cheap. Now that politicians want women to plug labour market shortages, they have suddenly noticed this fact. So if child benefit is to be increased to cover the costs of care, what about a similar benefit for those who look after the over-18s? The notion that there is something ignoble about payment for care seems to have survived in this sector. Indeed, one might prefer to be cared for through love rather than for money, but the latter doesn’t preclude the former. Few parents refuse Child Benefit because they fear it will taint their relationship with their children. Carers have to live too.
Nurses, social workers and doctors have also suffered from this ambivalent attitude to care, this notion that if you do something from a sense of vocation you do not need a full industrial wage for it. Their unions do mention the special nature of this work – but they use this to claim wages on a level with those in other sectors. There is little status nowadays without adequate financial reward; few people in nursing and teaching take a vow of poverty. Why should carers?
Is informal care better than the formal variety? The answer is not simple – it all depends on the person’s condition, the carer’s resources and the health of the relationship between the parties. Most people would probably prefer informal care, particularly if it allows them to stay at home. Some would prefer a paid assistant to perform the necessary maintenance tasks as they feel this allows them more normal relationships with family. Some would prefer to pay this assistant themselves. However, even our flush-with-money state probably couldn’t afford to pay the full cost of formal care for everyone who needs it. But an inability to pay the full economic cost shouldn’t mean no payment at all. As things stand, there is a major inequity between those who are cared for in the formal sector at the state’s expense, and those whose care is given by friends or relatives and not paid for at all. The degree of care needed is not always the deciding factor. Nuala Fitzgerald spoke very movingly of how she came to realise that she could care for her daughter at home, despite the latter’s considerable medical needs. She was able to give her daughter the sort of life that no institution, however good, could provide, precisely because she was catering for her in a loving and individualised way. Her motivation was not financial. But she was irked by the barriers and costs she met along the way. Even the most dedicated of informal carers needs time off. But that minimalist respite requirement has been provided only in an erratic and sporadic manner. The health boards are only beginning to put support schemes in place – speakers outlined several at the Conference.
What do we know about carers? They come in all ages and sizes. One of the most touching speakers was a teenager who helped with the care of his disabled father. However according to Brighid Barron, National Co-ordinator, Caring for Carers, 86% of them are female and 25% are over 65. It’s not a job where you get to retire early. Well over 90% of carers look after relatives. The main issues Brighid identified were recognition, finance, support, respite, information and advocacy. It’s interesting that recognition came before finance – care is often an invisible support, and the more sensitive the carer, the less visible it may be. The person receiving it may not fully acknowledge the support received. And yet, as Helen Ruddle had written, equality of status between carer, care recipient and service provider is crucial. If any side of that triangle is distorted, the balance of care will be out of synch. Equally crucial to that mutual respect should be the knowledge that each side could swap places: in their private lives service providers could be care-givers or care recipients; many carers will need care themselves; some of those who receive care may also give it. Sometimes an elderly parent and a middle-aged daughter with learning disability will prop each other up, alternating the caring role.
In learning disability we often forget about the other carers – those who look after elderly parents, those who support relatives with physical disabilities or mental health problems. At the Conference we were able to exchange experiences. And while comparisons are invidious, one couldn’t help making them. I got the impression that services for those with learning disabilities are better developed and less problematic than services for other groups. Although caring for a child is hard, some of the emotional role change difficulties of caring for a parent are absent. People with learning disabilities are less likely to reject the day-service on offer. But what do you do if your elderly mother flatly refuses to go to the day-centre? How do you cope if your physically disabled relative says he doesn’t need respite care, that he doesn’t want to stay with his brother while you go away? How do you support somebody with mental health problems who not only doesn’t want your support, but says you are the cause of their difficulties? Different carers outlined all these problems.
The fact that the Western Health Board sponsored this Conference is perhaps a sign of an official change of heart. They launched their research document on informal care the first evening of the Conference; it documented the numbers of people requiring care in their catchment area. They held the Conference in a nice hotel with excellent facilities; the workshops focused directly on the carer and ways to improve his or her lifestyle. They encouraged independence, outside interests and an awareness that, however endless caring seems, it is usually just a phase which will end. Most importantly, the Western Health Board put their money where their mouth was; they made a respite grant of £150 available to carers who needed to pay for substitute care in order to attend the conference. Why can’t the government do something similar? My suggestion is that they offer the Domiciliary Care Allowance – a non-means-tested payment of around £90 per month, payable to mothers of children with severe disabilities – to all carers who cover more than thirty hours a week. Surely a Celtic Tiger economy can afford that small gesture to those who provide the type of care that most of us would choose for ourselves.