…no I’m not talking about sweat shops. I’m talking about being a carer in Britain today. We criticize developing countries or big multi-national companies for failing to pay wages which cover the basics- while I’m completely behind that- did you know that all over this country the state knowingly abuses carers? Knowing that carers won’t fail to help their dependents but the state uses them as free or cheap labour. Refusing to pay them an amount that will come close to covering the basics, if it pays them at all, means that quality of life for carers is usually very low. There are so many criteria through which many people working more hours than a full-time job fall through and are not paid at all. My carer, Paul Wilkinson writes about his experience as a carer and a student.
The 2001 census revealed that 1.9 million people provide over 20 hours of unpaid care a week with 1.25 million providing over 50. The 6 million who are paid using the carer’s allowance benefit receive £55.55 a week for providing over 35 hours of care, which works out to disgustingly low amount of £1.58 an hour!
These grim statistics are accompanied by the disturbing revelation that carers themselves are twice as likely to become long term sick or disabled as the average person.
I’m one of the 1.25 million who provide over 50 hours of unpaid care to a loved one. I want to look at the problems faced by carers and the help, or rather of the lack of help, available to them. While I could write endless pages about the plights of the disabled, and rightly so, in this case I want to stick with what I know firsthand. The problems faced by the disabled and carers are, however, interwoven so from reading this I hope you will gain an insight of both sides of the coin.
First things first, it’s important to note that not all disabled people will have carers. Some manage perfectly well without the need of care, or at least get by with relatively little care. Others don’t get the support even if they desperately need it.
A carer has a lot of pressure on them. They are ultimately responsible the well being of their dependent. They are required be on hand literally twenty-four hours a day, seven days a week. Some have to be ready to wake up at any point in the night and then to be completely alert throughout the day because one mistake could set the dependent back months. That’s one of the worst things about disability. It can take someone months, even years, to reach a certain level of health, however only a small mistake to send someone back to the beginning. Due to the lack of provision to support carers, you are essentially never allowed a day off, and definitely not a sick day. I manage to get away for a couple of hours a week but that’s simply not possible for a lot of carers. Insufficient support for the disabled puts a huge burden on carers, and I’m sure a lot of disabled people would agree that sometimes their carers bare the brunt of consequences when systems or other people fail to play the role in help they promised or when the state fails to provide the right care. This is increasingly becoming a problem for a lot of people because of government cuts. Anyone who works with disabled people knows that often benefits and additional support is cut when clearly that person is in dire need of the support they were getting.
A good example of this is where DLA is cut for people with immobility issues, part of the support they get is specially adapted cars. When the benefit is cut, they lose the car and therefore their independence, meaning that a carer (if there is one) needs to do all of the things the disabled person used to manage to do for themselves. It’s a frustrating cycle.
Many struggle to be able to leave their dependent to go to lectures, so to work, is out of the question. Inevitably, the financial pressure on them can be overwhelming.
If you are a full time student and a carer, whether it is for a parent, sibling, partner or child, the cold reality is that there is no financial help for you. Absolutely nothing. Often when I have made this claim people refuse to believe it. Even professionals (doctors and Support Centre Staff) tell me that it can’t be true. I often get told, for example, that I could just apply for Carers Allowance. It turns out, that in all their wisdom, those running the country decided that you are not entitled to carers allowance whilst in full time education.
This technicality has had massive effects on young people’s lives. For example, imagine an eighteen year old caring for a disabled parent. This 18 year olds household is financially reliant on the Carer’s Allowance, because it is increasingly difficult to live off the government’s support. Despite the popular impression of the ‘comfortable’ life that people have on state benefits, those who are reliant on Disabled Living Allowance, Carer’s Allowance or Incapacity benefit seriously struggle to stay out of poverty. This is something which is getting worse with the disabled being targeted disproportionately in the government’s austerity measures.
Now he or she has ambitions to study at university, however, how can they do so if it will mean losing their allowance and their family falling into poverty? In an impossible situation where the carer is ultimately restricted in a personal and professional capacity. The same restrictions apply to all carers who are trying to find an occupation that could fit with their care responsibilities.
This not only effects the carer, but puts the dependent under a lot of pressure forcing upon them an unnecessarily burden of guilt. Which in turn usually leads a worsening of their symptoms, meaning the carer has to do more, and so the awful cycle goes.
For student carers there is also very little educational support available. When a carer is up all night with a dependent, has to take them to medical appointments, or is unable to leave them alone due to ill health; there is no access to, for example, note takers, lecture recordings or similar resources that are made available for people with medical conditions. Ultimately this means the carer’s work suffers significantly without any recognition from authorities that they have any kind of disadvantage.
It isn’t all doom and gloom. In my experience, University staff have been incredibly helpful and supportive. I’ve been given extra support from lecturers, personal tutors and my head of year and have been offered extension on essays and an exam schedule split over the normal exam period and the re-sit period. I cannot speak highly enough of the individual members of staff who have gone out of their way to help. The problem is, is that this is support has been down to the individual’s discretion. With disabled students, law states that universities do all they can to make sure that they are not disadvantaged. Also, for disabled there is Disabled Student’s Allowance which is used to fund support workers that go to lectures on their behalf. No such thing exists for carers. Ultimately, a carer’s life can focus around the life of the person receiving the care, if that person suffers an unpredictable illness, such as fibromyalgia, then the carer’s life too is unpredictable. Attempting to fit in full-time care around a full-time university course means being incredibly efficient and organized- that’s something I’ve had to learn. When the system or the routine fails because of a ‘bad’ day then things can easily go into disarray, in many cases, carers either fail or prepare properly or even fail to attend assessments. Until there is official recognition for carers, they are always going to be in a precarious position.
I must stress that I do not intend to give an impression of carer’s being more hard done by than disabled students. Disabled students face a massive uphill struggle in university. My comparison is merely to reflect what could be done to help carers level out the disadvantages they face. Also I don’t mean to paint a picture of a carer’s life being miserable. It suits my purposes, however, to focus more on the disadvantages one might face than the aspects which are rewarding.
There is a massive lack of awareness of both the disabled and carers in university and in the wider world. Something which I hope will be addressed soon in order to give some of the most vulnerable and most gifted persons an equal opportunity to excel in life.
One of things I have seen frustrates Paul the most is that not only is there not a forum to voice your frustrations and affect change, but very few people care. He said to me this morning that he could tweet all day about carer’s allowance and no one would reply or re-tweet but if he wrote about Justin Bieber he’d get tons. Thanks for reading this post- will you help to raise awareness?
Justice will not be served until those who are unaffected are as as outraged those who are – Benjamin Franklin