OK, today I am mentioning the problems of a constituent, who also happens to be my daughter, has had with the Disability Living Allowance (DLA). It seems unfair if, just because of our relationship, I cannot raise this issue.
You see, once you are 16 you count as an adult, according to the DLA people at the Department for Work and Pensions. (Unless, that is, you are “incapable of managing your own affairs” in which case you need a note from a doctor to confirm this. )
One of my daughters has suffered from intractable, disabling and difficult-to-control epilepsy for the last decade, and in 2007 was awarded DLA at the highest rate. So when she turned 16, I rang the Department of Works and Pensions and asked what exactly was their definition of ‘managing your own affairs‘. Many young people with bad epilepsy have no cognitive deficit at all, but are affected by seizures and heavy meds. And anyway 16 year olds are not considered by the state to be capable of everything. You can’t marry without parental consent, you can’t vote, drink in a pub, drive a car, become a councillor, fight for your country etc – o, there’s lots and lots of things you can’t do at 16.
So what is the DLA definition of ‘managing your affairs?”
The man at the other end of the phone was very certain. “Can she sign a cheque?” he asked. “Can she walk to a bank and draw money out?”
O yes I replied.
“Then she’s capable of managing her own affairs,” he said. (This was two, two and a half years ago. LUCKILY they make a point of telling you they ‘record these calls for training purposes’, so no doubt they can easily find the proof that this is their advice !
… And I am the Grand Panjandrum himself, with the little round button at top…)
What a very very convenient definition of ‘managing your affairs’ this is and how very cynical it is of the DWP to offer it when you look at the reality! It seems custom-made to save the DWP maximum money and penalise most those least able to make a fuss.
You see, what the DWP don’t tell you is that they stop paying DLA after a short period unless you constantly reapply. This makes it very very different from any other benefit given to able-bodied people. The DWP do not send you a form to reapply on. They assert they send you a reminder, but can offer no proof that this actually happens. And if you don’t reapply, they silently remove the DLA.
And if a condition or its treatment has a bad effect on ability to remember, understand and plan things, too bad. You just lose the money irrevocably and without warning
Can I just point out, DLA is NOT pocket money. It is intended to help a disabled person to live as close an approximation to a normal life as possible.
In this case, as my daughter ‘manages her own affairs’ it recently turned out that for the last year all the things DLA was supposed to help her with (personal care, transport costs etc) have been paid out of her own savings. These savings are limited as it is very hard to get any paid job as a young person with bad epilepsy.
I’m telling the DWP that their payment process has discriminated and continues to discriminate against MANY, IF NOT ALL, PEOPLE SIGNIFICANTLY DISABLED BY EPILEPSY because of the side-effects of the condition and the medication. This is particularly shocking when this is the very reason my daughter, and many other like her, are supposedly receiving the DLA in the first place.
How can the DWP take no account of the very disability from which she suffers when deciding the methods by which DLA is managed, renewed and in this case, it seems, terminated?
The DLA application form claims to recognise the problems that people with many physical, mental and linguistic problems may have in filling it in. But if the DWP insists on dealing directly with DLA recipients from the age of 16, it is clearly and cynically discriminatory for them to fail to ensure that their methods of communication are dealing fairly with recipients and also taking account of their disabilities!
By the way, the long long 40page, 61 question DLA application form (which my daughter and I have just spent 3 whole horrible weeks filling in together AGAIN) is very poorly designed to elicit the specific problems of epilepsy
Q: Have you difficulty walking? How far can you walk (in metres) without difficulty? What help do you need in walking?
A: I can walk indefinitely without any difficulty UNLESS I am having or have just had a seizure. In which case I cannot walk at all! In such a case i may need help by being carried!
One’s reminded of Hannibal Lecter “O Officer Starling, you think you can dissect me with this blunt little tool?”
See also my post on applying for DLA