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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is lawnranger! Does anyone have experience of the DWP trying to reclaim DLA?

lawnranger

I am resisting the DWP attempts to reclaim 10 years of DLA from my daughter! When she was 18 the PCT panel were unanimous in awarding her NHS CHC due to the 'severity and complexity of her degenerative condition' which covered all the 'Care' costs in her residential home. Despite all her 'Care' costs being covered we were advised we would need to apply for DLA for 'All the Additional Costs' of her disability which would be considerable. The DLA application forms were the same as the old Attendance Allowance forms and dealt only with 'Care' and 'Mobility'. The Select Committee on Social Security Fourth Report (Session 1997-98) https://publications.parliament.uk/pa/cm199798/cmselect/cmsocsec/641/64106.htm explains that this is not a problem since 'Care', in the most severe cases, is an adequate 'Proxy' to obtain the benefit for all the Additional Costs incurred and also serves as a 'Gateway' (Free eye tests, prescriptions, school meals etc). They were wasting their time... both 'Proxy' and 'Gateway' are terms lost on the DWP for whom 'Care' is and can only ever be 'Care'. Even their predecessor the DSS had accepted that DLA is a payment towards all the additional costs of disability which ... may not include care.
I am really struggling to understand how the DWP can get away with relying on 1991 laws for people receiving benefits for care costs in the community who, very properly, have them removed 28 days after admission to a Care Home. This should be irrelevant in the most severe cases such as my daughter's. She had the same 'Additional Costs of Disability' wherever she is living and howsoever the cost of actual 'Care' is funded. The Select Committee noted that... 'DLA is a benefit which neither claimants nor Adjudication Officers fully understand' and much more that I sent to the DWP over a two year period and to which they never responded. This confirmed what Meg Hillier MP, Chair of the Public Accounts Committee had described as the DWP “Culture of Indifference”. https://committees.parliament.uk/committee/127/public-accounts-committee/news/98330/thousands-of-claimants-failed-by-dwp-culture-of-indifference/
I had a two hour (pandemic) telephone hearing of my appeal with a Judge in the Lower Tribunal. From a strictly legal point of view that 30 year old law has stood the test of time and the Judge found for the DWP forcing me to dig deeper for the energy to appeal to the Upper Tribunal for which my daughter will require qualified legal representation... her 70 year old dad just won't do!
During those 30 years Parliament has felt it essential to make the changes from Attendance Allowance to Disability Living Allowance to Personal Independence Payments... if only they had ensured the DWP were taking notice.
Strangely my daughter is allowed to keep her wheelchair adapted vehicle which has collected a lot of dust since 2018 with no money for petrol, parking, carers to accompany her, entry to events and all those things that a young woman should be able to enjoy to avoid imprisonment within four walls.
So far I have been successful in a 12 year 'eyeball to eyeball' running battle with the CCG and NHS CHC and will happily pass on tips to counter their shenanigans!
I just wish I could say the same concerning the anonymous and intransigent functionaries in the DWP.
If anyone has any experience or advice it would be much appreciated... even if it is only, "Give up now and preserve what's left of your health!"

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Ross_Alumni

Hi @lawnranger and welcome to the community. Hope you're well.

I personally don't have any experience of the situation you mentioned, but I hope others have useful insight to offer. I'm sorry to hear that you are being put through this by the DWP but I admire how much you are fighting to get your daughter what you believe she deserves.

Have you sought advice from Citizens Advice or Advice Local for your current situation?

lawnranger

Hi Ross_Scope, thank you so much for your welcome. I was a bit apprehensive joining the community and didn't expect such a quick response.
I was advised by my MP's constituency office to seek an appointment with a Citizens Advice benefits expert over two years ago which I did. I am afraid she confused me with someone unable to read the DLA booklet. When I mentioned the content of House of Commons Select Committee Reports and Social Security Acts of Parliament her eyes glazed over and she admitted that I probably knew more about it than she did. It was only with her use of 'probably' that I might have disagreed.
From time to time over the last 20 years I have been in contact with Nicola Mackintosh the solicitor who won the landmark Coughlan case in the Court of Appeal against the NHS. I needed to check that the law hadn't changed before my next battle with CCG NHS CHC nurse assessors. It is quite possible that another landmark ruling is necessary for those of the most severely disabled who have had their DLA for the 'Additional Costs of Disability' (and not for 'Care' at all) taken away.

lawnranger

Thank you mikehughescq (QC I suspect?) for the trouble you have taken to give me the benefit of what I imagine is considerable experience. I have sought qualified specialist legal assistance at every stage. The advice I received was always to go through the Lower Tribunal procedure representing my daughter myself. Should a further appeal to the Upper Tribunal be necessary qualified representation would be essential, but in the present pandemic situation seemingly impossible to obtain, to date.
Obviously I take your point that DLA for 'Care' stops 28 days after the 'Care' is provided by an award of NHS CHC. However, in my daughter's case, the NHS CHC preceded, by almost a year, the DLA application we were advised to make to cover some of the considerable 'Additional Costs of Disability'. Additional, that is, to the basic care package covered fully by NHS CHC. The cost of 'Care' was never a consideration. Parliament made provision for this and much more besides, which has been ignored. Even the DSS had accepted that the cost of the actual care, however financed, might not factor in the award of DLA, also conveniently ignored. Notwithstanding any laws that might, or might not, be applicable in certain extreme cases, surely it defies logic to pay a benefit, under the DLA umbrella and according to the intentions of Parliament for reasons that do not include 'Care', only to withdraw it according to rules laid down for the general mass of cases who do not have any 'Additional Costs' to be provided for.
I note that you question the relevance of the links I provided. I trust you do not extend those sentiments to the authors of the links, because if you do you would not be alone as I have discovered. Even here can the Separation of Powers between the Executive, Legislature and Judiciary really be just below the surface, but as a mere lay person I couldn't possibly be in any position to judge (pun intended). It would seem that Parliament has placed too much reliance on common sense prevailing and expected difficult cases to be decided in the spirit of the law as opposed to the easy option following the letter of the law.
During this Covid hiatus, in which access to proper representation has become problematic, I am seeking resolution in another place. If successful I will not need to burden the Courts, which are beyond my comfort zone anyway, further in this matter.
I do thank you for raising the key issue of recoverability. I have to admit I have been so concerned by the minutiae that I missed the big picture. I have been struggling to represent my daughter (who possesses no funds at all other than the pocket money we give her) and my ex-wife who is a hospital housekeeper currently cleaning around the beds of Covid-19 patents. I did mention this to the DWP and tell them that attempting to recover what might amount to £30,000 could be a futile exercise but they, you guessed it, ignored that as well.
It is two in the morning now. I am sure to gain more from your response after a night's sleep, but I felt nothing less than an immediate reply would show how much I appreciate your help.

lawnranger

Hi mikehughescq, I have had five hours sleep and read your advice again. I mentioned by daughter's wheelchair adapted vehicle because it is funded by the 'Mobility' component of her DLA which she has been allowed to keep since July 2018 when the 'Care' component ceased. Had a nurse been resident or the Home classified as a 'Nursing Home' she would have lost her 'Mobility' component and with it the car.
Disclosure is something I do need to look into. The bundle of 200 pages supplied for the hearing included the DLA application forms from 2009. It is a long time ago but I remember my ex-wife (who passed no exams at school and left with poor literacy) phoning me about the stack of forms. They sounded identical to the ones for Attendance Allowance that I had completed for my mother... page after page concerning washing, dressing, toileting both daytime and during the night. None of this was really relevant for the 'Additional Costs' purpose of the application she had been advised to make, but one-size-fits-all forms are frequently like that. She had been told (possibly by a DLA call centre, come to think of it!!) to simply, "Do the best you can and don't worry about it". I would no doubt have agreed and told her to tick the boxes since (having been my mother's carer for her final 6 years with Alzheimers) I never wanted to see one of those forms again. I once had to explain the blindingly obvious to the Head of ICA that when dealing with massive double incontinence in the early hours wearing rubber gloves, wellington boots and a respirator... you don't have a spare hand for a stopwatch to time how long it is taking!
My reason for the inclusion of those links was that Parliament recognised that the needs for 'Care' identified by completion of those standard forms served adequately as a proxy for the actual 'Additional' needs and special forms were not necessary. How wrong could they be? When I get a moment I will dig out that bundle and check whether the forms included the usual friendly 'Anything else you wish to tell us' trap and whether there were any prompts concerning CHC Funding. (I am feeling uneasy already!)
Apparently my ex-wife did ignore the annual 'Any changes' letters because our daughter was still alive, hadn't had a miracle recovery and no changes had occurred. A transfer from one home to another in 2014 changed none of her circumstances regarding the additional costs of her disability. A £50 Civil Penalty was imposed for ignoring those annual letters.
Apparently some Local Authority Social Services still believe the DLA 'Care' component is really provided for them despite Parliament asserting that it is for the 'Additional Costs of Disability' and can be spent in 'any way the recipient choses'.
Three years ago my ex-wife sat on the letter from the DWP for some time before telling me our daughter's DLA had been cancelled and a huge repayment demanded. I scanned the little 'DLA for Dummies' booklet (DLA95 04/17) and immediately came to the same simplistic view I have come to expect in others and effectively told her, "You don't stand a snowball's chance in hell!" Then I read it again more closely. Obviously the, 'after 28 days you MAY lose...' referred to self-funders, but were they the only exception? If they were it would have been quicker just to say so. At the bottom of the back page is printed in bold type... 'This booklet gives you general information only and isn't a complete statement of the law.' That was a waste of ink because the booklet in its entirety has become received wisdom and certain passages are all too predictably repeated almost as a mantra.
You are right about solicitors, but I also took advice from a judge who explained the procedure at FTT, gave me some pointers, but warned me even if my appeal was upheld the DWP would probably take it to the UT themselves.
I value your comments regarding 'failure to disclose' and 'recoverability' immensely and I can see a way forward along those lines should it becomes necessary.
In the meantime I am fortunate that my daughter's case is to be examined at a level higher than I could have hoped. In the present circumstances it may take some time but as soon as I know the outcome I will let you know.

Ross_Alumni

Hi both @Username_removed and @lawnranger

Hope you're both doing okay.

I find your different perspectives on this interesting, and @lawnranger I do hope that the advice given here has been helpful for you

I'd just like to remind you to keep your comments respectful and considerate. You might not agree with what another user says, nor should you if you believe otherwise, but expressing that in the right way is integral to developing constructive discussion on a community like this. We also have no reason to doubt the validity of another user's claims of who they have or haven't spoken to for advice in the past.

I'm glad you appreciate the advice given by Mike @lawnranger, and I do hope you manage to get more sleep tonight, 5 hours isn't a great deal.

Ross_Alumni

Username_removed said:

Say what! Not a cross word between us and nor will there be.

You may want to reread my post. As regards your observation that

Ross_Scope said:

We also have no reason to doubt the validity of another user's claims of who they have or haven't spoken to for advice in the past.

I’m afraid my observation was not that @lawnranger didn’t speak to a judge. It was very clearly that

Username_removed said:

No idea who your judge but I find it hard to believe it was a social security tribunal judge offering that advice.

i.e. I’ve no doubt the OP spoke to a judge but my view is that it stretches credulity to think that any social security judge would advise as described. That’s very different to what you have just posted!

I’ve a very sound basis for my view i.e. other judges know nothing of social security appeals; I’ve 35 years experience of dealing with social security judges in and out of tribunals and the latter would always encourage representation and back that up by saying how much easier a good rep. makes their job.

I’d appreciate it if you didn’t attribute opinions to me that I patently have not expressed.

You're absolutely correct, I apologise. I use a screen reader and with that particular comment about the judge I misunderstood what it said. However, the rest of my comment remains, please remain considerate of how your language and tone may come across to others, especially when written in a word format like this.

I don't doubt anybody's sincerity in their determination to help others, it's admirable, and I'm glad that your thorough, detailed responses has benefited the OP and I hope that when they see your latest response it is just as useful for them.

chiarieds

Also just a bit lost off with Ross's comment. I'm perhaps one of those odd people that read most posts, the better to understand. Mike was, as far as I can see, trying to give the OP clear direction. I can see nothing to indicate how his language or tone (which would be very hard to judge) might have been misconstrued. Definitely @lawnranger will hopefully look at the last sentence Mike posted in regards to best helping,

'Could you confirm that you have requested or obtained a statement of reasons and record of proceedings from your tribunal? You will need to put that in front of a WRO. That should be your sole concern at this point.'

lawnranger

Hi mikehughescq and Ross_Scope, I thought I had better wait until the dust had settled! I'm sure we are all good, but misunderstandings abound. I too am bewildered by your corrections, I have just copied and pasted this from the first site that popped up...
'The mobility component of your PIP or DLA will continue if you're in a care home, but stops if you're in a nursing home.' ... https://www.independentage.org/get-advice/money/benefits/benefits-hospital-and-care-homes
... perhaps they should be told they have got it wrong? Except they haven't.
My reference to self-funders was spot on too because if they were not an exception the... 'after 28 days you MAY lose...' would have been replaced by... 'after 28 days you WILL lose...'
Three years ago it took very little time to discover the 'self-funder' exception and also the matter of 'deferred payments arrangements' which a sort of delayed exception. Only then did the real work to discover whether any more rare exceptions existed.
It is my understanding that ultimately government departments and even the legislature are bound to carry out what Parliament decides. You may not have taken a case that far yet, but I have and successfully. If it doesn't work this time, at least I gave it my best shot.
I do agree with you that this present case was lost from the outset, when it is probable that proper disclosure was not made.
OK, so it has been a matter of trying to snatch victory from the jaws of defeat from the very beginning, something that will never be achieved by following the well-tried conventional approaches.
My reference to a 'trap' was possibly misplaced. My recollection of the most recent annual assessment for my daughters NHS CHC Funding was six hours (that is not a misprint!) of questions from the Nurse Assessor designed to obtain a favourable response so that a tick could be placed in a lower category in the DST domain. I had warned the carers that they would be encouraged to say my daughter was 'much improved' to enable a tick to be moved from 'severe' to 'moderate' so that they could cancel eligibility for CHC. Under the National Framework they had 28 days to give me their decision, but 4 years will have elapsed in April. I have taken on the CCG and won twice since 2012 with no assistance from anyone else. Only when all the staff that remember me have moved to take up a 'musical chairs' promotion to a neighbouring CCG will I be contacted for the next 'annual' assessment.
Though the above is scarcely relevant to the present matter I included it as a reminder that not all the new members are absolute beginners when it comes to dealing with little people in huge organisations who think they can trample on you.
I did indeed request and receive a very detailed Statement of Reasons. The transcript of the two hour telephone hearing was examined carefully and although the line could have been clearer and the numbering of our respective bundles of documents didn't always match, overall it was felt to have been a fair hearing.
At the risk of annoying you I have to repeat that my daughter received a benefit 'under the umbrella' of DLA for purposes other than 'Care' (which is provided for by Parliament, but denied by everyone else) yet the law applied was one specific for care and not for what she received.
Would a passenger in the back seat of a speeding car be subject to arrest under the Road Traffic Act as if they were the driver? Some might say the car was speeding and they were in it so the law applies.
The judge I spoke to specialised in the appeals of violent criminals and cases involving criminal gangs. I sought his opinion as to whether I was stupid to attend the tribunal without legal representation. He explained the relatively informal setting I could expect in detail and gave me several 'need to knows' and 'good to knows'.
In the event the main difficulty I experienced in the one to one telephone hearing with the judge was that I had no way of telling if he was taking on board the main points of my case.
Those would be the points which you will tell me were irrelevant... so I will save you the trouble of repeating yourself!
I keep forgetting to ask, what on earth is a WRO?
The discussion may get a little lively at times but we are still friends I hope and I appreciate all your help and advice.

Girl_No1

@lawnranger a WRO is a Welfare Rights Officer i.e. an expert in the legislation surrounding benefits (of all kinds). They assist in preparing cases for tribunals and represent claimants at such tribunals. In Scotland, WROs are available via local council provision and many charities/third sector entities also have their own in-house WROs. My brother was supported by the MacMillan Cancer Trust WRO in his application for benefits after his cancer diagnosis/treatment last year.

I would echo @Username_removed good counsel and suggest you obtain some expert/professional support in your endeavours.

lawnranger

Many thanks @Girl_No1 (if that's the correct way to address you, I am very new to forums!) In the six years as sole carer for my mother dying with Alzheimer's I got what I laughingly referred to as 'Assessment Fatigue', lots of funds for assessments but never any 'resources' for the needs identified. I had barely a couple of months of 'freedom' before my eleven year old daughter had the descriptive diagnosis of Juvenile Onset Parkinson's (but more probably Encephalitis Lethargica related) and I was back to being a nine hour a day part-time carer. I could hardly leave her side without her falling and hurting herself. I became 'All Cared Out' and was saved from a premature demise by an intuitive Social Services case worker who recognised the symptoms and intervened, successfully as I am still here 20 years on.
Throughout a quarter of a century of dealing, at the sharp end, with these difficulties a Welfare Rights Officer never crossed my path!
I once asked to speak to Christine Mayo, the then Head of ICA, and was told she was busy. I replied that I hoped she was and gave her the choice between a timed 5 minutes with me or an introduction to Frank Field (Sec of State for Social Services) and Virginia Bottomley my MP. Ms Mayo was brilliant and sorted out the problem... an anonymous adjudication officer (whose decision was final) had stopped £630 of ICA for 9 weeks spent cleaning the toilets in an Infant School as a relief (sorry about that!) caretaker because the CC had increased my hourly rate from £4.91 to £5.11 which put me over the magic £50 a week without me knowing.
My daughter spent three months of abject misery in a brand new 'run-only-for-profit' care home. It took me most of that time to identify who in the PCT had the authority to remove her to a place of safety. A carefully timed call on a Friday afternoon had him 'over a barrel' with no escape route and he gave me verbal permission to get her out of there. Forty miles and two hours later my daughter was grinning in the back of her WAV buried under black bin liners containing all her cuddly toys and possessions. Not a single member of the 'one-to-one' staff saw us arrive, remove their resident and leave
The CQC held a Safeguarding Case Conference and the Care Home Group put up their four senior directors across the table from me in the Council Committee Room. The CQC Inspector took me on one side and asked if she should remove three of them before we started. I thanked her for her consideration but declined her offer... I felt like asking her to check the car park for more as we were in for a blood-bath!! During the next three hour she understood my self-confidence in my outraged defence of my vulnerable daughter. I like to think those four directors had the worst day of their lives, but a police investigation (Operation Barista) into the unexplained deaths of 20 residents some years later may have put my best efforts in the shade, despite it being the blood-bath (as demanded by my Scorpio Ascendent!)
The CQC report concluded: Neglect... Substantiated. Abuse... Substantiated.
I won't ramble on further about the shenanigans of CCGs in my 12 year battle to prevent their persistent illegal attempts to remove my daughter's NHS CHC Funding.
I once took that to Cabinet level, but it was only when I agreed to a meeting that I got the result I wanted. Perhaps it was because I insisted on the meeting being held in a Court with the earlier statements repeated under oath and the customary penalties for perjury enforced. The prospect of imprisonment, being struck off the Nursing and Midwifery Council and a charge of Misconduct in a Public Office concentrates the mind even that of a liar. I received an apology and a retraction of maybe half a dozen of the worst 'porkies' immediately.
At least now I know what a WRO is. Thank you again for that.
Half a lifetime of having to deal with disability and grief has made me very sensitive to what others are going through. I do wish you and your brother well and hope he is responding to his treatment and obtains permanent remission.

Girl_No1

@lawnranger thank you for your kind words regarding my brother, they are appreciated and he is doing very well.

From your writings it is obvious you are "on a mission" and more power to those of us who take up the cudgel. However, I can only repeat doing so without expert counsel/support is, to my mind, not the best approach. As @Username_removed has already alluded, you may be tackling the incorrect *fight* in your overall *battle* .... an expert by your side would assist you to identify the nature of the battle *and* I would expect lessen at least some of the obvious stress this situation places on you.

Please think about, and at least explore the opportunity of, proper support for yourself. This will allow you to make the best efforts on behalf of your, very obviously, much-loved daughter and reduce the stress under which you are living.

Take care and stay safe.