Epilepsy: Applying for DLA (again!)

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  

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Caroline Page

Lib dem county councillor for Woodbridge, Suffolk

15 thoughts on “Epilepsy: Applying for DLA (again!)”

  1. How totally disgusting. DLA what a wast of time they are. i was fit free for 13 years then last year had a seizuer obviously lost my driving licence, medication increased and so on. I never knew I could claim DLA for the past 14 years so I applied. Point blank turned down! even though since my last fit my memory is appauling and I rely on my family for asistance and my 13 year old daughter!!! shame on the government shame indeed!!! utter disgrace. Maybe they should check what benefits they give to peole who do NOT need them and look at the benefits they could give to genuine people who DO need help!

  2. I have epilepsy i suffer with grand mal seizures at night in my sleep, i used to get dla about 10 years ago but my then gp told dla that i knew when i was about to have a seizures which is totally misinformed and around that time i was having awake seizures so i lost the right of dla i went to a hearing to prove he was wrong and was treated like a criminal and was turned down again i gave up trying because it was putting strain on my health but i tried again 2 years ago with epilepsy and depression and was turned down yet again this country does not treat people with epilepsy in the correct manner and im fed up with being treated like an outcast because of a condition i cant control

  3. If you are refused DLA for epilepsy you must put in an appeal within 28 days of the decision date. 60+% of appeals are won so don’t think you have no chance of winning.
    Many people believe that DLA is routinely turned down on first application anyway.
    An award is normally made for 1 to 3 years, 6 months before the award ends a renewal form should be sent out but it is your responsibility to know when your awards going to end, and before you all shout at me no I don’t work for the DWP but I work in welfare rights and have been told often that anything that happens with your benefits is your responsibility.
    As for DLA’s replacement PIP – its going to be worse for epilepsy sufferers from what we can see so far.
    I’ve already missed out on several years of DLA as no one knew or informed me that I could apply, not even my disability resettlement officer at the jobcentre.

    Caroline I beleive you can get married at 16 in Scotland without parental consent but when the new housing regs come into place don’t leave home till you are 35 – if your under 35 you won’t get full housing benefit.

    Picture the scene – 26 years old just discharged from the Army, unemployed and looking for work but not allowed full housing benefit as the single room rent restriction now applies till your 35, so you can fight & die for the country but your not old enough to leave home unless you can keep your job – rant over

  4. Thank you for this comment. However, if you reread my post, you will see it had nothing whatever to do with being refused DLA, or anyimplication that people are or are not routinely refused DLA

    Actually severe epilepsy tends to be so very fully medically documented, due to all the problems it causes, that (certainly in my daughter’s case) DLA is awarded instantly – and (in my daughter’s case again) instantly again.

    Hardly surprising. In such cases there is masses of supporting paperwork from everywhere – are reports from a&a;e, specialist consultants and hospitals, from schools etc etc

    My criticism of the DLA process – as it was under the last government at least – was entirely different. It was not anything to do with the way it is awarded in the first place, rather it was of the cynical process by which the DWP expected one to remember to reapply , and the extremely loose verbal criteria they gave for ‘managing your own affairs.’ This I continue to argue discriminates (maybe, more fairly, discriminated) against those who are affected by the effects of seizures and of meds – particularly since the DLA form recognises the side-effects of so many other forms of disability.

    And the DWP evidently agree with me! This time the award was made without an end date. And very sensibly, as medical evidence suggests that – with generalised epilepsy – if one hasn’t been controlled in ten years it is unlikely one will ‘get better’ quickly, if at all!

    As regards the new housing regs, I agree that not being counted as ‘fully adult until you are 36 would be truly terrible if it pans out like that. I’m afraid i don’t yet know the details. But the bottom line is surely how best to tackle the underlying problem – the lack of affordable social housing – due to one government’s iniquitous ‘Right to Buy’ legislation, and the succeeding government’s failure to repeal it! We should repeal it now and bring back council houses, say I!

  5. No, this is scaremongering! According to Epilepsy Action :

    The Department for Work and Pensions (DWP) are looking for volunteers to help test its new criteria for assessing people for personal independence payment.

    The personal independence payment (PIP) will replace working age disability living allowance (DLA) from 2013-14.

    They are looking for people from England, Scotland and Wales who have epilepsy and are receiving working age DLA.

    Epilepsy Action has agreed to promote this, and to pass on the names of willing volunteers to the DWP. We believe this could be a good opportunity to make sure that the needs of people with epilepsy are properly taken into account before the new benefit is introduced. (my italics)

    The results of the testing will be used to make changes for the next draft of the assessment, which will be published in the autumn.


  6. I have just been refused DLA dispite going into graphic details…. Upon phoning the awarding body I was told that “his Colleague has epilepsy and is fine”!!!! well good for her, don’t these people realise that NO two people are the same. i was also informed that those who suffer from anaphalactic shock don’t qualify either, why would I need to know that??? where is the link??? Oh and i was also informed that anaphalactic shock can kill….. Does this mean I should count myself as LUCKY…!!

  7. I find it very interesting how few people realise that epilepsy is not one blanket condition! In fact my daughter was ill for five years before I realised that very few children were having as bad seizures as she was – I’d never seen another seizure before, thought everybody’s seizures were the same, and no-one told me differently. We need a mammoth education programme for the entire country

  8. Hi my daughter was diagnosed with an epilepsy syndrome at the age of 3 and I fought for 3 years for dla for her but kept getting turnt down but kept trying but the next time I sought advice from the citizens advice and although they did initially turn her down again I appealed and got awarded middle care and low mobility for a year. She was awarded it for a year but I have since renewed it and just got the decision and they have turnt her down saying she doesn’t need the help she did before when if anything her fits a becoming hard to control with medication . I just don’t understand their appalling decision !!!!!

  9. Hi guys I was diagnosed with epilepsy 21 years ago after suffering a massive brain hemarage and having to go through major brain surgery and since that having to have several more surgerys. After about 3 years some one told me i was entitled to DLA so i applied and was awarded it but after a year was told i should never have got it and was entitled to nothing. About 18 months ago i was passed over to a new neuro surgeon and epilepsy specialist and was also assigned an epilepsy nurse who told me i was entitled to free presctiptions and a free bus pass. My epilepsy is becoming increasingly harder to control even with the increase in medication. But still i cant get help.

  10. Rachel, I would go back to the DWP and dispute their decision. If you have epilepsy you are automatically entitled to free prescriptions, and to a free bus pass (if it prevents you driving). You do not automatically get DLA just because you have a health condition (for example, I don’t). DLA is awarded to people whose disability is sufficiently bad that they are disadvantaged in comparison with an ‘ablebodied’ person as they go about their daily tasks and to help them to do so. It would seem likely if your seizures are hard to control that you may well be entitled to DLA. Have a look at my post on applying http://carolinepage.blog.suffolk.libdems.org/2012/02/07/epilepsy-and-dla-the-application/

  11. i am 16 and i have epilepsy and i have them in my sleep, i have been hospitalized and have had paramedics out due to my seizures, and im scared to try and claim this just incase they turn round and say no can somebody tell me what they would say so i can prepare myself just in case x

  12. i am 20 years old an unfortunately banged my head and ended up triggering my epilepsy, this was 2 years ago and i have yet to recieve an appointment for my EEG. i am currently on a benifit called job seekers allowance this means i am capable for work however my fits are getting worse and i am completely unstable. i am on a low form of epilepsy medication. i live in the country side and i am not allowed to drive when i applied for a bus pass the informed me that because i was on jobs seekers allowance which meant i was capable for work and i was not elegable for one. with all this i gained depression and anxiety and am terrified of leaving the house even answering the door to someone is a struggloe :( can any one advise me on what to do???

  13. hi just wondering if anyone could help iam trying to apply for a coucil flat i have bad epilepsy and i have had it since i was 2 years old iam now 19. I have been on medication since i was first diagnosed with it, its caused by stress and diet my private landlord needs us out soon and iam stressing on where iam going to live. hoping the council will help me get a one bedroom flat anyone know if epilepsy will help?

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