Benefits system baffles carers

Tina Bright seems to be having a good day. The 60-year-old has advanced Alzheimer’s – she can barely communicate, and needs 24-hour care for everything from feeding to washing – but she is happy about having some new people in her house in Cheam, Surrey.

Her husband Eric is in a good mood as well, although he is evidently tired. “I’ve been up since four this morning. You never know what might happen during the night, but I’m a light sleeper, so I can hear her when she’s up.”

Caring

Eric is a self-employed builder, but hasn’t worked regularly for two months because he is too tired from caring for Tina to do both (when he tried working full-time alongside caring two years ago, he almost crashed his van from exhaustion). Despite this, he won’t sign up for the carer’s allowance – the state’s main benefit for carers – because he doesn’t want to cut off the possibility of working in future by handing in his builder’s licence.

The carer’s allowance can only be claimed by someone earning under £95 a week. So for now, Eric is working occasionally and supplementing what money they do get by spending their savings. “This is the kids’ inheritance I’m spending,” he says, staring at a bank statement.

Dealing with the practical problems of Tina’s condition is Eric’s strong point. Heath Robinson-esque solutions – such as a wheelchair ramp that doubles as a stair guard – are common around the house. But as a practical man, the Byzantine benefits system stumps Eric. “Tina had her own filing system, very organised. I’m not good with numbers. I’ve got bills just sitting, waiting to be opened.”

Monologues

Her successful career as a PA in British Leyland is difficult to reconcile with the woman who is standing in the garden with the agency carer. Conversations with her tend to be monologues, punctuated by a few muttered words that don’t relate to what is being discussed. She laughs when others are laughing, but she doesn’t seem to know what she is laughing at. She once took care of Eric’s VAT returns, but now she needs help to walk down two steps to the garden.

Back inside the house, Eric is considering the full-blown war for space that is being waged in the Bright’s study between builder’s tools and untouched paperwork. The array of different benefits that each stack of forms relate to go some way to explain the mess – Eric simply isn’t sure which benefits they receive.

He thought Tina was getting disability living allowance (DLA) – he does have the application form for it but it is untouched – but if that was the case, she would continue to receive the money now that she has turned 60. Instead, he now suspects that she was on incapacity benefit, which if true, will have ended with her birthday in April. That should have been replaced by attendance allowance. But a problem with claiming the money means Eric doesn’t know whether they have any money coming in at all any more. Trying to unknit the various benefits that the Brights are eligible for is far from easy, but Lyn Hammond, a carers’ rights worker for Crossroads, says Eric’s situation is far from rare. “Most people don’t realise what they can claim at all. Most people think they will just go and ask the Citizens’ Advice Bureau (CAB) – that’s a good starting point, but the forms can be very complicated.

“The DLA form is 48 pages long. It’s all very well me saying ‘you’re entitled to DLA’, but what does that mean to you? Do you know who to ring? Or what to do when you see the size of the forms?”

Advice

Hammond suggests that people seek out advice from organisations like the CAB and Age Concern to get help with claiming benefits. In particular, she flags the discounts available for council tax as a benefit that many people don’t realise they can claim – Eric is now claiming the 25% council tax benefit, although he has only just discovered he is eligible for this, thanks to the CAB.

The council tax discount can also be backdated to the point where someone can prove their illness began, which needs a person’s GP to get involved. There are now so many people who need to claim council tax discounts that Hammond has started distributing standard letters among the people she helps for them to get their doctors to sign.

Getting reductions on council tax comprises a whole set of different rules and form-filling, completely separate to other benefits. The key points for carers are that people who care for 35 hours a week, and severely disabled people who claim certain types of benefit, can both be “disregarded” from the council tax equation. If, as a result, a household has no residents who count for council tax, there is a 50% reduction for households with one resident, there is a 25% discount. Eric hasn’t claimed the backdated council tax discount yet. Dealing with all the paperwork would be a challenge for most people, but for a carer it is the lowest priority after all the other things that need dealing with on a daily basis.

Unsettled

During the course of the day Eric discovers a damp patch on a bedroom ceiling that requires his attention. He has to tend to Tina when she gets unsettled. And to make sure cash keeps coming into the house, he also tries to arrange some building work Community Care’s photographer. All this on top of a 4am starting time means he doesns’t have the time or energy to be filling out paperwork. Alongside the complexity of the forms, it is the sheer number of them from different agencies that takes up valuable time.

“With carers, I think they should all have a one-off place to go with all the information we need and help with the forms. What I can’t understand is why, when they have got your details, they still ring up and ask your name, and keep needing it all the time.

“The government has got so much detail on me we don’t need another assessment, we just need some cash.”

Another assessment, though, is just what the Brights are likely to get. Alongside dealing with the fall-out from Tina turning 60, Eric is also trying to get better control over the money that pays for her 60 hours a week of agency care. Currently, the council and the Independent Living Fund – a separate fund that contributes money to those who have complex care needs – pay the agency directly. Eric is lobbying his MP to try and get the money given to him to spend as he sees appropriate.

Even when all the paperwork has been dealt with, the Brights will still not be in a position for Eric to claim the carer’s allowance. Hammond says the benefit is one of the most awkward to claim.

“You have to look after somebody for more than 35 hours a week. The problem is, if you’re earning more than £95 a week after national insurance and tax have come off, then you don’t qualify. That covers just about most people. People might consider giving up their job to look after somebody, thinking they’ll look after someone with the carer’s allowance. But it’s only £50.55 a week. That doesn’t replace an income.

“The other problem is that once a person comes to pension age, the government look at their pension as income. If that comes to more than £95 a week, then they can’t claim. And only one person can claim carer’s allowance. If you are looking after two people, you can still only claim one lot of carer’s allowance.”

It almost seems a relief to Eric that he isn’t now eligible for the allowance, as it would be yet another set of forms to have to fill in. As the day has gone on, Tina has seemed less settled with the strangers in her house. By mid-afternoon, he leaves behind the forms and bank statements and tends to her.

“I’m going to have to work this week for a couple of days,” concludes Eric. “All this time doing forms it’s just more time I could be spending with my wife.”

• Community Care article on the Carers Strategy

• More information on Crossroads Caring for Carers

• Further information on National Carers Week, 9-15 June

• Details on carers’ benefits 

• CAB advice on benefits