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D Day For The Personal Budget

May 20, 2014

Here is the letter I sent to all the people who will be at the review meeting next week, to review Steven’s personal budget:

My Position for the Meeting on 27th May re Steven Neary’s Personal Budget

When I offered to receive payment for Steven’s care package via a personal budget, my main motivation was to secure a budget for the long term future that would meet all his assessed needs.

I was horrified to hear about the enormous profits the care agency and the cab firm were making from commissioned services. It seemed to me to be a real risk that Steven’s budget would be cut significantly as paying the pre April 2014 monies was unsustainable. I also felt that it was morally suspect for companies to be making such huge profits out of Steven’s disability. Nobody was challenging the agencies about these practices but the consequence could have been that Steven would have lost out through no fault of his own. You will remember that I tried to negotiate lower rates with both the support agency and the cab firm but, right until it was too late and the new personal budget had been agreed, they were not prepared to sacrifice their greed to enable Steven to get the support he needs.

At the same time, the staff from the agency were feeling very discontent. They were on very low hourly rates of pay and receiving payment from the agency was extremely erratic. These are guys who live a hand to mouth existence and there were several times, when their pay was very very late, that I would lend them the money, just to enable them to fund their travel to work. With a personal budget, I had perhaps the naive idea that I would be able to pay them a better rate than they received from the agency and I would pay them regularly on time. I hoped by offering them this respect, I would be able to retain their invaluable services to Steven. To date, it has worked exceptionally well and I know they appreciate the lengths I have gone to, to ensure they are remunerated well and on time for the hard work they put in.

Since the Personal Budget has started, I have encountered several problems because my preferred way of managing the budget does not accord with the way Hillingdon seem to want it run. I believed, perhaps again naively, that Personalisation was about giving the service user choice, more control and flexibility. Frankly, although I don’t find running the budget at all arduous, the opposite of those aims seems to be the case. It appears that there is only the one way, the preferred Hillingdon way of managing the budget and anything else is considered unacceptable.

In agreeing to a Personal budget, I have suddenly become the employer of six people. I have about four hours each week free when I’m not caring for Steven or at work. Any arrangement to manage the payroll has to fit in with my time limitations. I find that Hillingdon’s choice to put the PB onto a prepaid card and then for me to have to pay the workers directly from the card inflexible and not in accord with the pay arrangements I want to have with the workers. The council uses a BACS system to move the money around and it takes five days to move money from the prepaid card to wherever it is going. I find that rather antiquated and unhelpful considering the limited time I have available to manage the funds. It is far easier for me to transfer a lump sum at the start of the month from the prepaid card into my direct payment account and then pay the workers, via online bank payments, from the DP account. That way, I can make a payment that will arrive in their accounts within two hours, or I can specify a date that I want to money to be moved. I cannot begin to explain how useful that is when I may just have 30 minutes one week to make the payments. But with the flexibility of on line banking, I can ensure that their salary for the previous week is in their bank accounts on a Monday morning. The prepaid card company also charges 50p per transaction, so I am saving a small amount of money by making just one (50p) transfer a month.

In the contract, the council stated they expected me to pay the workers monthly in arrears. This is a big change from their previous pay arrangement where they were paid weekly. It is difficult to ask people who are totally reliant on the money from their work with Steven to suddenly change the frequency in which they get paid. I am prepared to pay them weekly, and in fact, have been doing so. I’m aware that if I was doing that by the prepaid card, I would be using £3 each week in charges and the budget doesn’t cover that amount. However, by making a transfer from the card to my designated DP account once a month, I am not incurring those charges; in fact, I am saving £11.50 each month.

So, to reiterate, I am only happy to continue receiving a personal budget if I can manage it in the way I have outlined above. The council talk about having “a transparent trail” to see that public funds aren’t being misappropriated and that is perfectly viable with my preferred way of operating the budget. My online statements show for each transaction: the amount, the date it was paid and the name and national insurance number of the recipient. That is more transparent than the old system, which only showed a cheque number. I appreciate that with my way of working you will be unable to operate the online surveillance of the card that you’d prefer but a transparent trail isn’t compromised by my approach.

One other point – you have said that you expect to see the support workers’ personal bank statements to ensure transparency. I felt uneasy about this and checked with the Information Commission who felt this was “excessive”. The records you will receive include their name and NI number. Their contracts include all the personal details. Surely, that will be sufficient.

If my way of managing the personal budget is unacceptable to Hillingdon I am perfectly happy to go back to the old way of receiving the care package funds. It is no skin off my nose at all but will inevitably, be more expensive that the new budget. It would mean Hillingdon commissioning services from the agency and the cab firm again but that shouldn’t be too problematic as I know the current support workers are still registered with the agency, albeit they aren’t doing any work for them at present. And our new cab firm are sure to agree to a contract with the council but that may also increase the costs because they are doing it for me without a “contract charge”.

I’ll leave it up to you to decide and we can discuss any questions you may have and what your final decision will be at the meeting next week.

From → Social Care

  1. Brigid Greaney permalink

    Hope it all works out ok Mark

  2. swanarchie07 permalink

    Well said and for once I hope they listen good luck mark. We are having similar problems with our PB

  3. Weary Mother permalink

    This letter, and the response you get what ever form it takes, is of universal importance to us all.

  4. Sally permalink

    Good luck. You have made it all very clear, and it would take a very determined LA official to muddy the water on this one. Your way is straightforward, saves money, pays the workers on time, meets every requirement. In fact it sound like a very good way of managing DPs which they could learn from when they advice parenst setting things up in the future.
    My only worry about this watertight argument is that you are putting it to a service which insisted and insists that having your own place to go,a day centre where you can be safe, do activities, meet friends, store things, plan and chat is not as good as having nowhere to go. If they can argue that, what else are the capable of?

  5. Weary Mother permalink

    In the very recent past after a years long trudge through the nettle strewn path of the LA complaints systems, the Ombudsman’ laid out in a letter, agreement that my son had been lengthily and seriously neglected and potentially worse. The actions required of the LA and what was needed if ‘it’ (a number of ‘its’ ) was not to occur again were spelled out. The letter also admitted that swift change was unlikely in this LA..

    I sent the ‘Ombudsman’s’ letter to the adult care manager to be included in my son’s next review, a very few months later. I was told ‘this’ (letter/contents/investigation) was ‘historic’ and not relevant to the review. (A couple of months is ‘historic’, it takes that long to see someone in LA?) A vague reference to a complaint, but not the circumstances, was included in the review outcome documentation – but only when I persisted.

    Very, very bad and dangerous – life threatening things happened to my son again over and over again since then; that most recent LA complaints process agreed all ‘this’ was very serious indeed, but would not tell me what they have done to prevent it etc etc, but assure me it wont happen again. How?

    They put it very well in French; something about ‘if nothing changes nothing at all ever changes’ ?

    Be interesting to see whether Hillingdon proves this wrong?

  6. Shirley Buckley permalink

    Weary mother how right you are very, very bad and dangerous – and we are all totally helpless. My son and I have been in the Court of Protection (protection ha ha bloody ha) since September 2008 and Martin still has not got a valid assessment of capacity. Mark you won in the Courts, but it still hasn’t changed the LA’s hostility to you. The psychology of social services communication with parents is very interesting – I have been called to 2 Protection of vulnerable adults meetings without any evidence against me at all, been offered meetings with a psychiatrist twice, and, in a written memo “there is enough evidence to ask the GP to refer Mrs. Buckley to a psychiatrist”. The latest is “when Martin was at the *********in late 2007 to mid 2008 you were offered input to assist you to develop strategies with him.———–I am willing to explore agencies in your area that could offer support for both Martin and you to assist with communicating with Martin———-!!!!!!!!!!!. Martin is 37 and has had a very complex epilepsy since he was 2!!!!!!! This would be ludicrous if it weren’t VERY VERY BAD AND DANGEROUS

    • Edna permalink

      Shirley the sad fact is, as I am beginning to realise, once people have with any luck sorted out their own personal disputes with social services they rarely act as a public conduit to push for change for others in a similar position. We are effectively on our own.

      That is why SS is going to get away with demonising and lying about carers and contributing to the harm and abuses and even deaths for whom we have cared. We are the ‘bad’ guys’ and they are ‘angels who can do no wrong’.

      Without a noisy public campaign, not just for personal issues, but to gather a collective momentum which truly nationally challenges this system of ‘care’ we will not achieve more than the odd personal victory for us and our own. It gets me very upset, but human nature is thus in these times.

      Where collective and even individual action has moved beyond just the personal in other areas of injustice sometimes even individuals have achieved something that goes beyond their own case, because they have made others in power listen.

      • Thats a bit harsh Edna. The main point of this blog is to try and bring issues from social care more into the open and hopefully reach an audience that wouldn’t normally be thinking aboout this stuff. Likewise, I believe the #107days campaign is doing phenomenal things that I feel will really have an impact for all learning disabled people.

    • Sally permalink

      Offering coping strategies training come what may is one of their most common tactics. Without any assesment at all to see if you are in need of any such thing, you will have it suggested that you seek psychiatric input for yourself (the problem must be in your mental health and ability to cope) or strategies with your son (the problem must be that you do things wrong with him. ) This will be suggested when you are asking for very concrete things-respite etc.

      There is the underlying suggestion that its all your fault-you are mad, weak willed, devoid of behavioral strategies.Why, if you were doing things right there’d be no problems!

      If you refuse the psychiatrist/parenting group, then any problems are attributed to your stubborness and stupidity. (“She’s still struggling? Well, Miss X offered stress management!”)
      If you politely go along with it, you have in essence agreed that any problems are your fault.
      I once called up our Social services’ “Single point of access” worker on behalf of a fellow parent (sane, very up on ways to manage difficult behavior) who had been quite badly hurt by her disabled son. She was asking about specific crisis/after hours/respite help.
      Without attempting to assess either the level of any risk or the extent of her injuries or what she was already doing to help her son, the worker suggested she sign up for a parenting course in a coupleo of months. I asked what I had said to indicate that the problem was the mother’s parenting skills. Reply? “Well, we all need help to be better parents, ha ha. ” If she went, the problems at home were her fault. If she didn’t, she had turned down help-bad parent! She had been offered input and had refused it. Boo! Boo!

  7. Edna permalink

    Mark- the issue is not just relevant to learning disabled people. The issues are those that encompass anyone with a ‘disorder the brain’ as defined by the system as those lacking mental capacity. Without a comprehension of the common issues affecting families caring for such people as well as the vulnerable themselves in the name of ‘protection’ I fear things will not change . Radical change is needed at political level to change the harmful and abusive power relationships affecting us when we deal with with state officials.

    The numbers game would take the issue to a different level- combing forces with those similarly affected to make strong and persistent political and media supported waves about the disgusting system of control and coercion of families trying their best.

    My health has been so seriously affected by what I myself have experienced that should I have the energy and live a few more years I do intend to make waves greater than one person might make. To some extent I have already started this and had some unexpected outcomes from my efforts.

    • anonymous permalink

      I agree with Edna, radical changes and only us as a collective can do this.

      This effect everyone with a disability does not matter which end of the spectrum one’s disability is, Its how the MCA is being used.

      Now all hands up to arrange a meeting POINT and lets all discuss the way forward. CAMPAIGN AND MEDIA ATTENTION…….TO HIGHLIGHT THE ATROCITIES THAT IS BEING DONE TO ORDINARY FOLK who care for loved ones USING THE MENTAL CAPACITY ACT…..

      As we have all been traumatised.

  8. Shirley Buckley permalink

    Ive read allyour letters. At least we are agreed that this is a massive mis use of power – what next.Today I start a huge legal battle over DOLS and there isnt a lawyer who will touch it.

    • Why not? Legal aid is still available for a dols challenge

      • Shirley Buckley permalink

        Mark Martin has been in the Court of Protection since September 2006. I cant make public the judgments, altho I have asked for permission. Martin had the Official Solicitor as his litigation friend. The case was total***********. Only now after the House of Lord Select Committee’s decision can I prove that I was right. Martin himself took the case back to the Court last August, and we are now waiting for a decision on Martin,s capacity. If he has capacity I canemploy a solicitor on his behalf. We are also waiting to see if I can be appointed Deputy for Health and Welfare. Also many of thebarristers who are employed in this area have already acted in the original case. I will be 80 in October and like Edna I am tired

      • Edna permalink

        Mark- you yourself experienced how difficult it was to get a lawyer in your case- but one came forward to your internet based appeals for help- this was your great fortune. I have paid an expensive lawyer in a well known firm (has been in the media) whose lawyer hadn’t a robust knowledge or the balls to challenge the LA using the worn ‘ arguments’. I would not warte my money again for nothing. I realise that campaigning and media can be more powerful in political issues.

        Very few lawyers or legal firms will challenge LA’s with legal aid money because they can act for LA’s whose deep pockets hold taxpayers money which pays amply- so they prefer either this work or cases which ‘make history’ and enhance their personal / firm’s reputation.

        Lawyers and judges are no more conerned about us or moral than the rest of the gravy train public sector. I would choose not to be a litigant in person, but am unlikely to live long enough to learn the relevanr laws / cases to actually take any action.

        Shirley / Weary mother I weep to read of your plight in your advanced years. Although much younger I will not reach anywhere near your age and fear my cared for, at ages much greater than yours, outliving me- they too will have no one to fight their corners.

  9. Weary Mother permalink

    In my comments, since I found Mark’s blog, I have alluded to the ‘very very bad things which have happened to my son in LA care.

    People I talk to about it are beyond shocked. People should be in jail. He has ‘capacity’ when it suits the LA, when they seek to cut his care. I am an interfering ”who do you think you are”, oldie, who my son needs protecting from when I challenge. I have a reputation – I have been told.

    Now here is the problem – around going collective and public. Our wonderful but vulnerable sons and daughters will become the ‘Aunt Sally’,when we die with no one to challenge for them. And some very there are nasty powerful people (and they can be in very junior roles – for everyone has more power than us and ours) in the care world. The Public care sector is a small village. For example I read that in the LA where disgusting Long care scandal happened, almost every one who worked as a paid carer before scandal was exposed, had worked for Long care at some time. Those not prosecuted at the time, are potentially working ‘caring’ some where, now, in this LA?

    I am not far off eighty either. I have watched the ‘care’ tide go in and out on my son for nearly 50 years. I have white hair and citalopran medals.

    I am no wimp, but I am now am tired from running round the challenge wheel. There have been so many losses to my son and his family in our long fight for safe care and justice. We have used up so many years and lost so many good days, just trying to get what other tax payers believe they are are paying for..

    The worse aspects of Public sector culture(s) are very resilient, partly because it/they believe(s) in itself, but is in fact blind and deaf only looks in. A fortune of Public money has been spent trying to change it. If we the tired and old get together to publicly expose, we will only die sooner. We need more brave Marks (bless you) – YOUNG PARENTS WAKE UP FOR THE ‘GOOD’ TIMES END AT 18 – people who still have time to protect their children, and we will come along with our zimmers, our wooden rifles and our pitchforks and with our dying breath, we will become, mum and dad’s and granny’s army?



    • Edna permalink

      meant to say I would schoose to be a LIP.

      • anonymous permalink

        This is outrageous and must stop. Shirley is 80 years old and still fighting……How on earth is this allowed to happen?

        What is going on with our country and to ordinary folk who have spent a lifetime fighting to make changes….for loved one’s with disability….

        Let us start now and not waste any time…..

        Mark, can we arrange a meeting point?

      • Shirley Buckley permalink

        Edna I have been a litigant in person for all the years Martin’s case has been in the Courts. It was a matter of principle. Most of the judges didn’t know how to deal with me, one said I needed a lawyer “emotionally”. I just said I can put the case to the Court better than a lawyer. If I look at it neutrally it was an extremely interesting experience. On the other hand my relationship with Martin was used to bully and intimidate me. Martin has Lennox Gastaut epilepsy. When I told the Court this I might as well have said Martin had the dreaded sprog. No one knew what epilepsy was, and the Judge asked me what an emergency pack was.

  10. Shirley Buckley permalink

    We need a newspaper behind us at least. And I need to be allowed to publish the judgments re Martin and me, and the case. Then I can go ahead for us all, once people have seen these judgments

  11. anonymous permalink



  12. Edna – I disagree again. Whilst finding the solicitor that represented us involved a certain amount of luck, I had been working at it for ages and had spent lots of time, energy and money trying to get one. I could have given up at any time but didn’t. I dont agree also with the sweeping statement that all lawyers are on the gravy train and dont have a moral compass. Some are aboard the gravy train for sure but I’ve met many since 2010 and their committment to human rights and serving the vulnerable is both inspirational, moving and reassuring

    • Shirley Buckley permalink

      Mark sadly I can’t find onewho will work for Martin. And my experiencce over the last 15 years has been that both solicitors and barristers are only too aware that the system has failed, one only has to read Munby and Charles statement to the House of Lords Committee. Ive just read Sarah’s blog re Jane and her deputyship. I applied for one last August so help me God I now find out that it will be useless if I do ever get it. I have just had a letter from the LA saying the Home has applied for standard authorization request as they consider Martin’s care is a deprivation of liberty. HE HAS BEEN IN THE HOME FOR 6 YEARS.

      • Edna permalink

        Dear Shirley My heart feels for you and the battle you have endured for Martin and for the others who post here in a similar situation..

        I have decided this is Mark’s blog site and his perspective and experience is his to write about here and it does not accord with mine, so I will leave him to it..

        There needs to be a national campaign of carers like yourself and many many others who are ‘silent’, lacking internet presence to gain a following, as we are just so worn out, old and in my case faced with terminal illness thanks to the stresses I have endured and the inability of lawyers to challenge the whole safeguarding industry from which they too make a good living.

        Human rights? whose rights? Not of the vulnerable and voiceless and their worn out carers.
        The MCA is unfit for purpose and safeguarding a ‘jobs’ industry for those who would never get jobs elsewhere outside of the pay of the public sector.

        Judges are largely out of ouch with reality of everyday lives and too willing to accept social workers opinions of these lives. Yes mere opinions- heaven help us. Munby seems more reasonable, but he still takes lines in cases which are not reasonable deferring to social work / LA / their ‘experts’ opinions.

    • anonymous permalink

      Mark is right, it is not the Lawyers its the “MENTAL CAPACITY ACT” being used to destroy families and dehumanise people causing death along the way.

      Why is it 80 year olds are put into contentious challenges to protect and safeguard their loved ones.

      Something is not right……

      • Pauline Thomas permalink

        In my experience nothing will change until the government in power stop handing over the money earmarked for the welfare of people like my son to professional conmen.

        The money is there, but it is creamed off by professionals who want the biggest slice of the cake. Then there are a multitude of charities, care companies, businesses, etc who want a slice of it too. That leaves a pittance for the foot soldiers actually doing the ‘caring’. I use the term ‘caring’ loosely because sometimes ‘caring’ is the opposite is what actually happens.

        Mark has proved exactly how personalisation works, or does not work in most cases. There is a huge industry built around ‘caring’ and it is not for the benefit of our loved ones.

        Then there are the academics who write reams and reams on how to care, what went wrong in the past and how we must change our way of thinking about the care of learned disabled citizens. All a waste of money because no one in power i.e. the local authorities and their highly paid gate keepers (called commissioners) will implement these changes. They will plead poverty on behalf of their respective LA’s.

        Then there are us. The carers. Downtrodden, weary, confused and utterly unable to change a thing. People like Mark are the exception. Thank god he is sharing his experiences and thank god he is strong. Most carers I know are just glad they have any care, let alone decent care. My husband and I have been to local care meetings with carers and reps from the LA and watched while the council reps, squirm, lie and dodge questions. It is shameful, but no carer in the room seems to challenge them. In truth they are frightened of losing the poor care they have got. This is a terrible situation. My husband challenges them, but no one in that room is prepared to back him. Actually maybe not challenging the status quo is the only way carers can survive. We are the exception but we are the losers. The divide and rule policy that most councils use to bring their enemies under control works. .

  13. Shirley Buckley permalink

    If anything happens to me I shall expect you lot to take Martin over for me. He is already looking for a family to adopt him when I die so there another challenge for you!!!!!!!! Edna I need to talk to you personally I think. When Ive got time I hope to open my own blog no Martin’s blog

    • Edna permalink

      Dear Shirley

      I have not met the ‘inspirational lawyers Mark expounds here so perhaps he should guide you as someone who has ‘won’ in a system most of us ‘drown’ in I am fighting in my own way now, but I have more than one person I care for as well as my illness so I cannot be more engaged personally.

      Pauline I agree with much of your sentiments. I too have wondered whether I should be grateful for the ‘poor / abusive care’ and failure to safeguard.and the lies and demonising of me or expose the situation which affects many many who fear speaking out. I will speak out, but in my own style and time. My professional background does help..

      But we do not have many altruistic people in society, (I am an altruistic sort) who will voice things beyond the personal.,(without some personal gain). Fear is the enemy of truth and humanity, both at a personal and societal level.

  14. Edna permalink

    Judges, barritsters, lawyers and health and social care professionals have been implementing the MCA- they have not exactly been voicing concerns about the issues that we are voicing from first hand experience. The committee looking at the MCA has only recently gauaged the perspective of families and I wonder just how radical a change (aside to DOLS authorisations) they would be prepared to recommend. I want my voice to be upper most even if deemed to lack mental capacity, my wishes shoukd be uppermost- that is human rights- otherwise I would be, as most now are, deemed a ‘non person’ without rights other than those others (mainly professionals , but sometimes over protective families, ‘graciously allow us’ in order to ‘protect us. I want protection from the state not from myself..

  15. Edna – its okay to disagree with me. It would be pretty arrogant if I expected every reader just to agree with my views. Mostly in this blog, I write about a personal experience. People can say that they have had a different experience from mine (good or bad) but my experience is still valid for me.

    Anonymous – can we blame the mental capacity act? It’s just a sheet of paper. I think it’s down to the professionals who adminster the act where the problem lies. It’s hard, from a theoretical and ideological position to argue against the five principles of the act – they sound very cool. Most of the cases we read about (including Steven’s) are about the abuse of the Act. There isn’t enough clout in the act to haul up the professionals who are abusing it. I’m sick of hearing social care professionals say: “Oh – for the Act to work we need a massive culture change”, or “It’s all about the training in the Act”. Sod a culture change – if we wait for social care professionals to bring about a change in their own culture we’ll be waiting for ever. It’s a piece of legislation ffs – it should be about implementing and enforcing the law. I can think of many other professions (ok – perhaps banking) where the professionals can brazenly ignore the law because it doesn’t suit them.

    One other point about listening to carers – I went to the HoL review and it was a bit disappointing how few carers responded to their call for evidence. If you look through the full published written submissions, there were just a handful from carers. I know from speaking to one of the people on the committee that they really wanted a more balanced set of experiences to learn from but didn’t get them. We all want the terrible things we experience to change – I believe we have to take up the gauntlet when it comes our way.

    • Shirley Buckley permalink

      Mark Ive spoken to Lord Hardie about the Committee’s condemnation of the MCA and asked him and many others what I should do now. No that’s wrong – what Martin should do now. Sue the LA, or the Court. All we can do is wait for the hearing in the Commons, which is useless. I have taken up the gauntlet, but it is only because Martin himself applied to the Court that he was even heard. IF I could publish what happened in Court it would give me a lot of clout – but I cant get permission. What would happen if I did publish? Prison?

      • Have you tried asking them again, now that Munby has talked a lot about the transparency of the court? I wasn’t allowed to talk about our case until the February hearing and it was agony. I was told that if I did I was in contempt of court and, yes, that could carry a sentence.

  16. Shirley Buckley permalink

    IYes Mark I have tried everything. Letter to Charles and one to Munby both not even acknowledged.I am trying to find a barrister who will advise me. The two judgments were 2007 and 2011, Agony is the word. Munby couldn’t be clearer, but the only opening seemed to me to be to write directto him at the COP..Ive tried to get a newspaper to help. I am very tempted to publish and be damned but it wont help Martin. Im off to bed now

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