Think the benefits system is unfair? You don’t know the half of it…

The current government has done a very good job of manipulating our collective understanding of the average benefit claimant.

Whether it’s the single mother with 12 children, getting a spanking new council house built or the layabout with the ‘bad back’ or ‘depression’ who is still able to enjoy expensive trips abroad and energetic hobbies, we have bought into this idea that too many people are cheating the system.

In reality the Department for Work and Pension’s own figures show that fraud – actual lying rather than error on the part of the claimant or officials which makes up most of any overpayment – accounts for less than 1 per cent of the total bill and is not increasing.ellie1

But the drive by Iain Duncan Smith to crack down on benefit cheats and to make absolutely sure that there is not some work you could be doing somewhere, is now putting so much strain on the system that the most vulnerable people in society are not having their needs met.

I know this because one of these ‘most vulnerable’ is my cousin Ellie, who lives at home in Bradford.

Ellie is 19, nearly 20. She left school a year ago at a graduation ceremony that had everyone in tears. Like most 19 year olds, Ellie has strong opinions on what she wants and likes.

But that is about the only thing Ellie has in common with your average 19 year old because Ellie was born with a part of one chromosome missing. The doctors did not really know what this incredibly rare condition meant for Ellie, it was a guessing game. But they did not think she would survive to adulthood.

She defied those expectations and 38 operations later, Ellie is living with one kidney, 70% curvature of spine, holes in heart that were repaired with coil, a ventriculoperitoneal shunt which relieves the pressure of fluid on her brain caused by meningitis, and a tethered spinal cord that has left her with bowel and bladder paralysis.

Ellie is funny and stubborn and has a big attitude but also has the mental age of five and cannot read or write.

One of the aspects of her severe learning disability is that she cannot cope with change and feels most secure in her specially adapted room downstairs (she has limited mobility and cannot walk far or climb stairs) watching Mr Benn DVDs and listening to the Hokey Cokey.

Her brain injury means she has to be sedated to sleep every night.

Now she has left school she attends a day centre run by Home Farm Trust three days a week, where she receives one-to-one care.

You would think that the extent of Ellie’s condition would make any benefit claim simple. She is by no definition physically or mentally capable of doing any kind of work, nor does she know what work is.

She is an adult by number only, in reality she is a young child and she needs round the clock care. Her condition, laid down in her DNA, will never improve.

This is reflected in the fact that she has been awarded disability living allowance for her care and mobility needs unconditionally, that is her parents will never have to reapply on her behalf, because officials accepted the severe, unchanging nature of her condition.

Bureaucratic farce

As soon as she left school last July, her mum Louise also applied for employment support allowance for Ellie.

She filled in a lengthy form stating that Ellie could not as much as make a sandwich for herself, let alone change her own colostomy bags or pads, that she does not and never will have the mental or physical capacity to work.

The GP provided a ‘sick note’ outlining the severity of Ellie’s disability and all the relevant documents were supplied.

Yet this was not enough. Ellie must undergo a medical assessment, they said. Even though she had already had a medical assessment by the same department, this did not count and the fact of her claiming unconditional disability living allowance was not classed as evidence.

Ellie, who is quite often in pain, has to be sedated to be able to sleep

Ellie, who is quite often in pain, has to be sedated to be able to sleep

This week, Louise was told that they had reviewed Ellie’s file and decided as she was not in a position to leave the house, they would have to arrange for an assessment (a private costly assessment done by recently appointed company Maximus) at home.

For this there is a six to 12 month backlog. And after this year of waiting, when the assessor comes, takes one look at Ellie and apologises for putting them through this process, there is no guarantee of back payment, and while she waits for this bureaucratic wheel to clank round she only gets half of what she should.

Why, you might wonder, does someone who has no concept of money need the benefit at all?

Because it will pay for transport, and £84 worth of incontinence pads a month (cutbacks mean she does not get enough), and the part of her Home Farm Trust sessions that her parents are currently paying for, and her respite care, just to list some of the costs that being severely disabled brings.

Every professional that cares for Ellie is outraged. Her GP (who has to send a new sick note every three months) and social worker have both written letters. The DWP is essentially accusing them of lying about Ellie’s needs.

They are starting from the position that we are all out to cheat the system and like naughty schoolchildren we must be told who is boss.

While Ellie is waiting more than a year for someone to decide if there might be a job she can do, she’s losing out on £200 a month. That is £200 that her parents are having to find to provide for her basic needs.

We know of others who are going through the same rigmarole, and I do not believe it is cynical to assume the general strategy is to hope you will give up and not bother fighting for what you are entitled to.

There also seems little point in making you jump through the hoops, fill in forms, send in documentation, if the computer will always say no, and insist on an assessor to check you are not trying to cheat.

I wonder if there is ever any circumstance in which they will accept someone is unable to work without putting them through this protracted process.

Those front line workers dealing with Ellie’s case, are embarrassed and admit the system is broken but have to follow protocols from on high.Ellie2

I would love to see them try to do an assessment on Ellie, they are unlikely to get so much as a blood pressure given she needs to be sedated just to have her hair cut. She cannot answer any of their questions and catch her on a bad day she will probably tell them to ‘get in the bin’.

If you believe that a measure of a society is how well it treats its most vulnerable members, this would suggest we are failing.

Yet every other agency involved in Ellie’s care, from health to social care to education has been fantastic and able to apply common sense, fairness, and decency.

For her family who have worked tirelessly to provide the best quality of life they can for Ellie to be treated like beggars or criminals is appalling.

Ellie and thousands of severely disabled adults like her are not ‘grey areas’, they should not fall between the cracks of the system, they should be given what they are very clearly entitled to and given it promptly.

These are the stories we should be telling on the front pages of our newspapers, the stories that should shock and shame us.

Maybe then we would remember why we have the benefits system in the first place.

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