Attendance allowance: the £200-plus a month many elderly people miss out on

It is a tax-free benefit for ill and disabled over-65 – but many either do not know about it or are unsure about claiming

Tom McLeod, 90, says attendance allowance makes it possible for him still to live on his own. Photograph: Mark Pinder for the Guardian

Many ill or disabled people over the age of 65 are missing out on getting attendance allowance, worth up to £73.60 a week for the most severe cases, because of misconceptions about the entitlement conditions, according to leading charities.

Attendance allowance is a tax-free benefit paid to people over 65 who need help to look after themselves because of physical or mental disability. But don't be put off applying if you don't receive help from a carer; the allowance is based on the help you need, not the help you actually get, and you can get it irrespective of your income.

"You don't have to have someone caring for you in order to claim, and you can spend the money however you want," says Age UK. "It does not matter if you live alone or with other people, or whether you have a carer – what matters is that you need help with personal care, supervision or watching over. Whether you are actually getting any help is irrelevant."

Age UK views AA as a well-targeted benefit which helps many older people with disabilities stay independent in their own home for as long as possible.

"Many older disabled people could be missing out on this allowance and we are keen to encourage those in need to put in a claim," says Age UK's charity director, Michelle Mitchell.

Currently claimed by nearly 1.8 million people and costing around £5.4bn a year, AA is designed to help with the extra costs of disability; take-up is strongest among older people on lower incomes. The benefit is not means-tested, so it is not affected by any savings or income you may have, and receiving it will not reduce other benefits you may receive.

You may qualify for AA if you are over 65 and have a physical disability (including sensory disability, such as blindness), a mental disability (including learning difficulties), or both and your disability is severe enough for you to need any of the following:

• Help with things such as washing (and getting in or out of the bath or shower), dressing, eating, getting to and using the toilet or communicating your needs;

• Supervision to avoid putting yourself or others in substantial danger, for example needing someone to keep an eye on your medical condition or diet.

AA is paid at two weekly rates: £49.30 if you need help with personal care or supervision during the day only or during the night only; or £73.60 for those who fulfil both the day and night condition. Just over a million current claimants get the higher rate while just under 800,000 people get the lower rate.

You can get a claim form by calling the benefit inquiry line on 0800 88 22 00 (textphone: 0800 24 33 55) or download a form or start a claim online. You need to describe on the form how your disability affects you; a medical examination should not normally be necessary.

A government spokesman said AA is not one of the state benefits currently under review, but organisations such as Age UK would like confirmation that its availability will not be adversely affected by proposed welfare reforms.

Mitchell said: "This non-means tested cash allowance gives people independence. At a time of spending cuts and tightening eligibility criteria to access local authority social care, attendance allowance is something that older disabled people can depend on at a time of great need."

What do people spend attendance allowance on?

An Age UK survey of 700 older people claiming AA showed that the majority (60%) spent it on help in the home, for example on cleaners and gardeners. Just over 27% spent it on household repairs and decoration and 25% used it to buy care services.

Of those surveyed 46% spent extra money on heating their homes, 36% spent it on more or better quality food or food relating to a special diet or having pre-prepared or cooked meals delivered. Some 14% used the money to buy clothes and shoes and 13% also spent some on travel, for example, a mobility scooter or adapted car, paying petrol money to people who gave them lifts and hiring taxis when public transport was not an option.

Case study: I got £49.30 a week

Attendance allowance "does exactly what it says on the tin", says 90-year-old Tom McLeod, pictured above. Receiving the £49.30 a week rate gives the retired clerical assistant from Newcastle – who has ongoing problems following a heart attack in 2003 and chronic lung disease – the financial flexibility to continue living in his own home.

He uses the allowance to pay for a home help two hours a week, taxis to and from hospital appointments, a gardener once a fortnight in the spring/summer season, extra heating costs during the night in the winter and the occasional ready-meal to save him from cooking.

"It would be very problematic for me to stay living on my own in my bungalow without getting attendance allowance. I'd have to go into sheltered accommodation or a care home, which I don't fancy," he says.

He heard about AA five years ago when his GP offered to organise for someone to visit him and see if he was eligible for any benefits to supplement his state pension and pension credit.

"A lady came round from the council and told me about the allowance, which she said was a way of keeping elderly people with disabilities like me in their own homes," he says. "She took down lots of details and two weeks later I got a phone call saying I was eligible and would be getting the lower rate paid direct into my bank account.

"Without doubt it has given me independence by allowing me to stay in my own home and it's very important to me. I think there are a lot of people who would qualify if only they knew about it."

Case study: 'Im terminally ill but was rejected'

In 1985, as my doctor signed my mother's death certificate, he reminded me to cancel her attendance allowance. I asked how I could cancel something I'd never heard of. He seemed embarrassed and said she should have been receiving it for at least three years.

Asking around friends and colleagues, I couldn't find a single person who knew about attendance allowance; it seemed a curiously secret universal payment. Appalled by the hit-and-miss nature of the payment, I helped set up a monthly welfare advice stall outside Arnold Co-op in Nottingham, which I regularly helped to run until 1999 when I moved home.

In December 2010, six months after I'd had a hysterectomy for cancer of the womb, and feeling practically useless, suffering from extreme fatigue after radiotherapy, I applied for the attendance allowance. But I was refused – apparently, I was too healthy.

Then, in June 2011, I was told the cancer had returned and my condition was terminal. At least, I thought, they can't now refuse me the allowance. But they did. I appealed, and was told that it would take 11 weeks for them to reconsider their refusal. I pointed out that my doctor had sent the magical DS1500 form for special treatment, which meant I should be paid immediately.

But the Department for Work and Pensions was adamant. I must wait 11 weeks for a decision. I asked for special consideration because I might be dead by then. I was really offended that, according to my interpretation of the DWP's attitude, my cancer specialist and GP were somehow in collusion with me to defraud the welfare system. Their reply? I'd have to manage because I wasn't eligible.

I rang the Macmillan helpline, where the adviser was extremely supportive. But I also remembered how my MP, Vernon Coaker, had been an enthusiastic supporter of our welfare information stall. On the Friday, his researcher took the details then used her special "hotline" to contact a DWP supervisor to check my claim.

On Tuesday, she rang to tell me the claim had been accepted and that I was to have my "back pay" in my bank within five days. Oddly, next day I received a letter from the DWP telling me I must not even ring them for the next 11 weeks while they reassessed my claim. I ignored it, and rang them. Official confirmation – my back pay was on its way into my account. By the next morning it was there!

A terminally ill patient does not need the hassle I endured. How many could find the energy to fight a refusal? I know government departments are under pressure to make cuts. Am I cynical in thinking a terminally-ill 75-year-old little old woman like me is a temptation?

The system is cumbersome, exhausting and frustrating, for no good reason. Cut the cost of administrating this benefit by cutting the red tape. Instead of employing doctors to check completed DS1500 forms, the receipt of a signed DS1500 form from a GP should automatically trigger the payment of attendance allowance.

After all, no one asks to be given a death sentence just so they can fiddle the government.

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