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A Personalisation Dusk

April 1, 2014

I can’t believe I’m writing this post less than 24 hours after the “A Personalisation Dawn” post. I just want to scream. AAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGHHHHH.

Yesterday, the council loaded the personal budget onto the prepaid card. They have a really weird system where 25% of the annual personal budget is paid in the first month and all subsequent 11 payments are for a lesser amount than a normal four weekly figure.

I transferred a large sum of money from the prepaid card into the old direct payment bank account to cover: 1) the support workers’ wages for this week, 2)the cab fares for this week and the next four weeks, 3) the support workers wages for the next month that I will be paying on a weekly basis. My plan was to transfer this week’s wages from the DP account into the workers’ accounts on Friday afternoon. And then do the same for the next four weeks. I get 1 1/2 hours free time on Friday whilst Steven is at the Mencap pool, so this seemed to be a good time to get the job done.

This afternoon I received a phone call from Hillingdon’s Direct Payments manager. It was not pleasant. I felt like a naughty schoolboy. She had checked the account (after one day!!) and noticed that I was conducting the prepaid card not in accordance with Hillingdon’s policy. It is against the policy to transfer wages into an account and pay them from there. All support workers wages must be paid straight from the card into their bank accounts. At 50p a transaction. I was to transfer the money straight back onto the card. The council cannot audit or monitor the prepaid card any other way.

I tried immediately to transfer the money back onto the card and then learned something else that nobody had bothered to tell me. Monies transferred from the card into an account take three days to get there. So, by using Hillingdon’s system, I won’t be able to pay the support workers on Friday as they are expecting. She phoned me at 3.55 and a transaction has to be done by 4pm for that day to count in the “three working days” timescale.

In the last month, I’ve met or spoken to the social worker, the support planner, the direct payments officer, someone from the local disability charity who the council commission to “provide personal budget support”, the fairer charging officer and an agent from the prepaid card company. Not one of them told me that I couldn’t transfer the funds into the DP bank account. Not one of them told me that the funds take three working days to clear. Six fucking people and I’m doing their job for them. All they have to do now is monitor, audit and provide non-existent support.

I checked the personal budget contract that I’ve just signed. Nowhere does it mention that the wages have to be paid direct from the card. It mentions that Hillingdon’s prefered option of payment is using the prepaid card but nothing else. So surely if it suited me better, we could forget all about the card and they pay me as they have done for the last seven years. I could do the wages at a time that suited me. I could foster the good relationship I have with the support workers by paying them on time and when they do an urgent shift I can pay them immediately. And I can save quite a bit of money on the charge the card company levy for each transaction.

Another thing the direct payment officer said that worried me because it seems a real breach of data protection to me. She said that she would regularly ask to see the support workers’ bank statements to make sure that their account details match the ones showing up on the card account. Is that okay? I’m their employer – not the council. Is it right to ask my staff to handover their bank statements, which of course will have lots of other private transactions on them. I can’t believe they’re allowed to do that.

Of course this is all about trust and control. I’d hate to work in an environment where the culture was so distrustful and controlling. All those people who’ve been involved so far have nothing to do anymore – I’ve taken the whole load off their hands. Their sole role is to monitor, audit and bully. It’s very unpleasant.

I’ve written to all the people who’ve had their finger in Steven’s pie. I didn’t know who should be the main person I address it to because nobody seems responsible. That’s another thing about all this and must be the shadow side of social care emerging again – nobody is accountable so they make the carer overly accountable. For things the carer couldn’t possibly know unless one of the professionals tells them. And if the carer does something they don’t like, insidious little threats creep into the game.

I don’t think anything Hillingdon are doing is about Personalisation. It’s their way of cutting support packages whilst maintaining and growing the massive internal and external industry that has prospered out of the personalisation agenda.

It really does stink.

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From → Social Care

33 Comments
  1. Sherone permalink

    It really, really does stink!

  2. You shouldn’t have been so quick to try and reverse what you did in the first place. You did it the correct way. “Preferred” does NOT mean “Mandatory” legally. You were within your rights to do it the way you did it. And Hillingdon CAN see where the money is going if you show them YOUR bank records. It will show exactly to whom and where and when the money was transferred. That will be binding and protect you in court. They haven’t got a leg to stand on. No, they have no right to audit your employees records. They don’t work for Hillingdon.

    You have a contract – or whatever it is called – written out with Hilldingdon and if it does not say that you have to transfer money weekly specifically, that it is “mandatory”, then your plan is acceptable and legal. You have it in writing.

    Try one more time to do it your way and the next time she calls to complain ask her if she’s going to take legal action against you for doing it your way. Be direct. “What are you going to do about it if I continue to do it this way? Talk to your lawyers and call me back with a clear answer, please.”

  3. Kay permalink

    What Stephanie said. Tell the Fuhrerin where she gets off. It’s not your fault that she’s too thick to understand a perfectly acceptable – and auditable – system.

  4. jayne knight permalink

    totally agree. its like they can’t bully you in the system of residential care but my God they can invent and create new systems to make it a nightmare in what should be straightforward personal budgets. Arseholes!

  5. Astrid permalink

    Bugger. You’re damned if you do, you ‘re damned if you don’t. Well said Jayne.
    It’s no different in the south west. We ended up with a Social Worker when I told the SS I couldn’t cope and felt like leaving my daughter with the SS for the w/e. He told me I should consider myself lucky compared to some of the desperate families he sees. He made me feel even more desperate.
    Where is the care????

    You’ve hit the nail on the head Mark….ohh I wish I could write as eloquently as you…. The SS are just the gatekeepers to the money. Makes me mad to read all your battles…but also I realise it’s not just our lonesome family fighting the gits! Jeez it’s just one battle after another. Tomorrow I’m off with daughter to battle with the imaginatively titled Bowel and Bladder Clinic. We shall be arguing about nappy allocations. Lol.
    x

  6. Liz. permalink

    Asking to see employees bank accounts is outrageous. And what can it possibly prove? Anyone with the energy and desire to run a complicated scam with lots of accomplices wouldn’t be deterred by that anyway! This, and the card, is bullying surveillance that is intolerable and excessive.

    I hope you can stick it out, and get to the point where they leave you alone to get on with it. You are SAVING public money at the cost of your own time and stress, they are, as usual, busy wasting it. How much is the card company making overall at 50p a transaction? Direct Payments accounts are very easy to monitor, so why are cards necessary?

  7. I want to say I don’t believe it but I do and there are just too many horrendous incidents like this right now! What if you say you don’t want the prepayment card you just want a direct payment into your account for you to sort yourself! Its shit! We need to highlight these examples as its down right harassment and raise it nationally! Its ludicrous.
    I still think an argument could be had that once cash has left the councils account its no longer in their control. Thats why I don’t like pre payment cards the power does not shift!

  8. ex-social worker permalink

    …I recently left statutory social work because I couldn’t bear the shitty realities of personalisation you describe. It’s awful – is backdoor privatisation justified by weasel-words of “empowerment” and “choice”. Just awful. All my SW colleagues feel the same. Really admire what you’re doing in such a terrible system.

  9. Hey Mark, I’m and Adult and Older Persons social worker in Hampshire and I can tell you that we wouldn’t dream of asking to see PA’s bank statements. It’s completely inappropriate and they have every right to refuse to share these with the council. I agree with you though that there is less trust from on high with DP’s- there is an implicit direction in my team to only offer a DP if they are going to have a ‘managed account’ I.e a charity running the payments in and out of the DP account. Think that’s a bit over the top but then we have discovered DP’s being used to Pay World of Warcraft and Netflix subscriptions recently. Good luck

    • Kay permalink

      And if WoW, or home movies, are how the person with the disability prefers to spend their leisure, that’s a problem because…..??? Sheesh, controlling, much? How would you like to have some stranger evaluating every one of your waking activities as ‘worthwhile’ or ‘useless’ (according to some criteria not agreed by you)?

      Frankly, getting to make one’s own decisions over how one spends one’s time and money sounds like a far better option than having to lay out one’s personal budget on chain-coffee-shop products that one doesn’t want, on account of the commissioned service has been withdrawn but the person with the budget is obliged to fake ongoing ‘access to the community’ so that the Local Authority can still claim to be making provision (and carry on slicing off a cut of the money).

      https://markneary1dotcom1.wordpress.com/2013/09/21/costa-del-soulless/

      • Well, thanks for that attack on me. Clearly I am not going to go into the details of a particular case and I’m not going to argue in favour of the LA because the point I was trying to make was that I agree with Mark- it’s too over controlling at present and I agree clients/ carers should be able to decide the best way to use their budgets to meet their assessed needs but sometimes on the rare occasion people misuse it.

      • Weary Mother permalink

        And making these assumptions is dangerous. My son is middle aged and lives independently. He has Down’s plus many other disabilities. I saw him sinking deeper by the day, for months, and he had no money. I asked his LA repeatedly to please check his benefits. They deflected me by saying it was his fault for not budgeting. His rehab support worker (directly employed by the LA) stated ‘he has more money than me’. I appealed to the Head of Adult Care who replied in a letter saying ;we all need to budget and cut our cloth etc’…My son bought too many video’s apparently.;, They did not check why he was sinking and hungry, for they blamed him. I was powerless.

        I went through the lengthy complaints process and they eventually checked. He was in fact on only half benefits for years, ……..and I had no power to do anything….just watch him sinking.

        Assumptions by others, on what he could choose to buy…., with his own money….could have killed him.

    • I dont really understand the rules that exist around “legitimate” expenditure of a PB. Steven’s PB is strictly controlled and there is no money allocated for anything other than the wages and the cab fares. All the things he does during the week, he pays for himself. But there are many stories in the Personalisation world of people using their budget to go snowboarding, football matches etc. I guess each LA makes up its own rules about how the money can be spent.

      • Kay permalink

        Sewcial Worker, I apologise for making the form of my comments personal. I should have said, “How would any non-disabled person like.their every waking activity to be scrutinised… ” etc. , since I intended ‘you’ in a more collective sense.

        And I take your (personal) point about unusual spending being a point of legitimate concern -presumably as an indicator for ‘mate crime’ or other abuse, but why are the spends picked out to trigger investigations so often those deemed ‘frivolous’? As Weary Mother says, that approach implies a form of judgmentalism on what a person with a disability is ‘entitled’ to do, which can mean that real, life-threatening problems (hunger, injuries, hygiene) are discounted or flat-out ignored.

        High spending on food/eating out might mean that someone was very busy and therefore very hungry, or it might mean that someone else was freeloading off the person with the PB, or it might mean that someone newly looking after a person with (say) Prader-Willi syndrome, had failed to grasp a necessary component of appropriate care. Would it be questioned? How would anybody at the other end of a telephone line be able to tell whether concern was merited?

        And yes, none of the above applies to Mark and Steven anyway. The call from Hillingdon’s finance department was all about imposing process on Mark for the convenience of bean-counters, and nothing whatsoever to do with providing suitable care for Steven.

  10. Sally permalink

    Mark, I agree with everybody and I just can’t believe it.You should sit tight and ask what Hilingdon will do if you proceed-as Stephanie said, a preference is not a legal requirement. I would prefer my street to be paved in gold but I can’t enforce it in court. They’re trying it on, methinks.

    Reading of your unwelcome call, I found it very hard to remember that you are not an employee in payroll/human resources/accounts.You are being treated as an unsatisfactory employee, not a parent, one of the people she is employed to assist.How dare she call and hector you?

    Exactly how does any of this consitiute freedom for your family? Stephen gets to do much of what he did before, but it takes superhuman efforts of unpaid work on your part. And nobody is responsible! This is, in my view, the great evil about any of this personalisation crap. They save money by shifiting a mountain of work onto unpaid parents AND nobody is accountable any more for what happens.Young person’s life terrible? All very regrettable, but lots of private agencies are involved, nobody is checking and its the parent’s fault.
    It is not freedom. It is responsibility without power.

    I think the only way to fight this is to lay out just what personalisation means for parents. Exactly how much work goes into it? What do you as a parent have to do? They seem to have a fantasy of very capable learning disabled people who would like the odd special event (waterskiing etc) but otherwise just look after themselves. Confronting the powers that be with what you had to do in order for your son to go to the pool would be very powerful. Pointing out that this is happening in the time you are supposedly relaxing.And that a good day centre was there several days a week,for much longer hours and you didn’t need to rent/heat/insure/staff it!

    I recently met with a social worker from our DCT about getting a befriender fo my son. Alas, they have nobody on the books right now and seemed none too interested in recruiting.Perhaps I could go and find one? I explained I was nervous about this-the CRBing/payrolling/interviewing/taxing/supervising etc etc. “I know its a challenge” she said brightly, as if I was a neurotic hurdler who needed a bit of encouragement to make a jump. “Why don’t you put a notice up on the library noticeboard and see who comes up?”
    I am being invited to pull strangers off the streets to care for my son.Untrained? Oh, no problem. I could train them! Or not. Nothing to do with the authorities.
    Isn’t this all getting pretty close to where this all started? Families with the LD at home or led about by any keeper they had been able to find. Nowhere to go, nothing to do. Dr Langdon Down, in starting up Normansfield in Victorian tines, for Christ’s sake, did so because he saw a LD young woman in just that miserable state and wanted to give LD people rich and fulfilled lives with activites, friends, skills.He must be rattling in his coffin.
    Stay strong Mark!

    • Kay permalink

      If Madam Fuhrerin treated a fellow-employee as rudely as she has treated Mark, he would have cause for raising a grievance against her.

      Next time she speaks to you, tell her the call is being recorded for training and monitoring purposes?

    • Weary Mother permalink

      Sally

      Dr langdon Down was weeping long long ago. I did one of my SW placements there in the eighties. It was a truly shockingly awful place. It was an ‘institution’ in every worse meaning of the word. It’s only ‘benefit’ to parents was they did not have the responsibility for caring all day and everyday…? Parents ‘just’ had to manage their anxiety, grief and guilt day after day.

      Currently, the mental health of parents and siblings is increasingly stretched to breaking with day to day pressures, poor care, and poor and weary support carers. I met with our GP the other day for a ‘chat’ and pills, and he told me parents are not alone to feel at breaking point, for many support workers/carers are also suffering.

      Mr/Ms CEO (£200.000 per annum, warm dry office, god status, benefits and no bedroom tax) try showing ‘caring’ for 15 mins on the run, then an unpaid journey to switch on caring for another 15 mins. for around 6 quid an hour….just for a day?

      We parents know we are sliding so fast into much worse, and this fear too, costs us. My son was born in the mid sixties. He was born into fear and segregation. Out in the real world at that time we abnormal parents only regained our place in society by disposing of our children, out of sight. Those of us who did not were left to get on with it all alone. Now he is in the clutches of the ‘Brave New World’ of the current gold rush: the newest way to the quickest easiest buck….the highly profitable commodity market – of farming vulnerable people.

      At no time has my son had a service that was not fought for by me. No improvements in Social Care have been gained for our son’s and daughters that have not been won by us parents/grandparents etc. Now we have this personalisation blunder buss scatter gun of fragmented services…. plus the same old same old; including our yearly so costly grovel at that always scary assessment time. Now it is all that plus the job of managing this confusing field full of the untrained and inexperienced

      I heard an exhausted mother of a very vulnerable adult son say recently ……’ there are so many new ‘fleas’ jumping on and feeding on us, that we don’t have time to stop and scratch. ………………’

      • Sally permalink

        Weary mother, you’re right. Normansfield became a mockery of itself. But when Dr Langdon Down thought it up, it was so great-a theatre! Job training! Very well supervised and trained staff !Activities! The belief that every person can learn something, do something and not be treated as subhuman! Activities modified to be accessible! After his death it feel apart and the nail in the coffin was the NHS taking it over. (The beautiful theatre Dr LD built for the disabled to enjoy was used as a storage room.). At the time it went up the LD were sitting at home or being led about by keepers.I was re reading “She’ll never do anything dear” about the experience of having a child with Downs in the 60s, and the optimism in it is remarkable. Parenst had started up Mencap, day centres and special schools were going up..What happened?

    • Liz. permalink

      “Responsibility without power” really sums it up. And, at its worst, the opposite sums up the officials involved.

      I have a daughter who wants no part of a Day Centre; where, as far as I can gather, she feels “warehoused”. Given the choice between £5 a month for some “activity” and a Netflix subscription, she would go for Netflix every time. Not my choice – but it is hers. Could we perhaps stop pretending this has much to do with choices? It is a lot more complicated than that. Mark has correctly identified that it is about money, and who controls it.

      The DWP is not the most liberal organisation, but they don’t scrutinise how appointees handle benefits. Obviously there has to be some caution, but if a parent shows an intelligent and responsible approach, as Mark clearly has, and the person involved is being well cared for, what is the point of this micromanagement?

      The Government’s enthusiasm for DP is because it saves money. My LA used to provide 20 hours of care, paying a high rate to an agency. When I went to DP and more-or-less doubled the hours, the cost stayed more-or-less the same. Being involved and highly motivated, we do it better and cheaper. And for free!

      • Kay permalink

        But we don’t do it for free. It’s VERY expensive.

        It costs us a lot: costs us in time, worry, phone bills, paper and stamps; in money that we might have been able to earn if we hadn’t been consumed by dealing with all this shit, and enjoyment that we might have got out of spending time with our relative instead of wading through admin.. And more time, and yet more time, and endless, soul-sapping, health-destroying stress.

        It’s only ‘free’ to the LA.

  11. Cathy B permalink

    Mark, stick with your original plan. You are not in breach of any law and if your actions don’t fit with Hilliingdon’s preferred model, tough! They have no legal right to see payslips. Stick to your guns. I was a social care consultant for a large local authority – hired to ensure the council met its legal
    obligations, so I know.

    Of course, when I needed help myself my “choices” were become an employer (I didn’t have the ability to wash myself much less file a tax return) or find a charity on the internet. When I was strong enough I got angry.

    There’s a line from a Public Image Ltd song: “Anger is an energy”. I used my anger to appeal and eventually I got their ‘agreement’ to use a home care agency,

    Use your anger to tell H where to go and keep hanging in there. With you in spirit.

    • Pauline Thomas permalink

      Mark Hillingdon just cannot get over the fact that you won the day in court. They now are using every tactic they can to wear you down. That’s what they do. Do these local government people ever feel remorse. Are their families more precious than ours? Local government employ people to look after their interests and not the interests of the people they are supposedly trying to help. The literature they produce reads like the services they provide are marvellous but they are just covering their arses. None of it is true. It is so unfair that you Mark stand alone to fight these injustices and yet they have all the power and resources to crush you. Please don’t let them. When you win we all win.

  12. Hi mark, do u have an email address so I could contact you about this? I employ a care agency for 7 sleeps and also three PA’S and day services for a full 84 hrs a week. I do this for my disabled sister. I work for a voluntary sector disability charity who provide advice and support for those on D.P. could we share Info? Thanks for all your help and advice, just by keeping it public and keeping it real. Thanks.

  13. iggy permalink

    hope this helps- As a resource and to argue my case and help many others i scoured policy’s local and national and have saved them all in one document. Any time i have a disagreement as to how i spend my budget i bring out the document!

    Fairer Charging Policies for Home Care and other non-residential Social Services, Guidance for Councils with Social Services Responsibilities states:

    Assessment of disability-related expenditure

    44. The overall aim should be to allow for reasonable expenditure needed for independent living by the disabled person. Items where the user has little or no choice other than to incur the expenditure, in order to maintain independence of life, should normally be allowed.

    Social care institute for Excellence- guide
    http://www.scie.org.uk/publications/guides/guide10/files/guide10.pdf
    • Payments can be made for day-to-day things such as dressing, cooking, driving,
    bathing children, support to facilitate discharge from hospital. They can also be used
    for social activities – visiting friends, evening classes and college courses, gardening
    – as well as for assistance to access training and employment.
    One of the most exciting aspects of direct payments is their adaptability. Service
    users can use them to organise their care in a whole range of new and more effective ways. Indeed, local authorities are encouraged to explore innovative and creative options for meeting people’s needs … the possibilities seem almost endless.10• Flexibility is an essential part of direct payments, and they can also be used as part of a combined package. For example, part of a care package can be provided through direct services, such as a day centre, while other parts can be through direct payments, enabling someone to live independently and choose their own support.
    • For the most part, direct payments are used to employ personal assistants, although this is slowly beginning to change. Page 4.

    Advice document from association of Directors of Social Services

    Personalisation and the law: Implementing Putting People
    First in the current legal framework page 16

    http://www.thinklocalactpersonal.org.uk/_library/Resources/Personalisation/Personalisation_advice/ADASS_Personalisation_and_the_law_12.10.09.pdf

    Leisure opportunities for people with disabilities are an area for debate and negotiation, because whilst people without a disability or long term health problem have to pay for these out of their own incomes, and must prioritise between their needs and leisure as a ‘want’ when spending their own money, the courts have already indicated that appropriate leisure activities may be an actual need for a person with a disability, in terms of their article 8 human rights to develop their personality within society.

    Think local Act personal

    http://www.thinklocalactpersonal.org.uk/_library/Resources/Personalisation/TLAP/Paper3ImprovingDirectPaymentDelivery.pdf page 7

    Encouraging Innovation
    Promoting and recognizing innovation as a positive force to be encouraged is a vital
    ingredient in supporting the take-up of direct payments. People need to feel supported to try new ways of meeting their needs and to be enabled to use money in ways which maximize the potential value for them as an individual from the resources available to them. This does not prevent councils from negotiating and finally deciding (subject only to judicial review on established grounds) what constitutes an appropriate amount of money to meet eligible needs. But once an amount has been determined, councils should be cautious of interrogating how people spend their budgets and using that information to reduce allocations. In setting local parameters for how direct payments can be used, councils should refrain from setting conditions which restrict the use of the direct payment beyond what national policy guidance requires. It is vital that people feel they have permission to use direct payments flexibly to meet outcomes and provided people operate within the law and use the money to meet agreed outcomes, further
    Interrogation of individual spend should be minimised.

    Care services improvement partnership

    http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_063908.pdf page 10

    B) Financial, administrative and audit processes

    In some local councils the nature in which direct payment arrangements have
    evolved has led to overly complex financial and audit systems and in turn
    onerous direct payment arrangements.

    As far as possible, council’s financial and audit systems should deliver the
    greatest flexibility possible for individuals.

    Considerations in assessing financial systems include:

    • developing a ‘light touch’ monitoring system which is proportionate

    • ensuring that peer support and local (user led) direct payment support services
    can provide support, advice and information

    • breaking down the barriers and myths that direct payment monies should and must only be used to purchase traditional social care services

    Guidance on direct payments For community care, services for carers and children’s services England 2009

    http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_121131.pdf

    14. Direct payments do not have to be used in the same way as if support was being provided directly by the council. Indeed, they are intended to give the individual the maximum degree of choice and control over how their eligible needs are met. Page 9

    19. As part of the move towards more personalised services, the Government wants to see more extensive use of direct payments, in particular by those groups that have not made wide use of them up to now, including older people and people with mental health problems. For that reason, councils have not just a power, but a duty, to offer direct payments in most circumstances. This has important implications both for the way in which councils undertake assessment and support planning in partnership with individuals, and for councils’ own commissioning procedures and planning. Page 10

    23. As a first principle, councils should aim to leave choice in the hands of the individual, allowing people to address their own needs as they consider best, while satisfying themselves that the agreed outcomes are being achieved. Page 11

    • Kay permalink

      Iggy, I salute you. That’s a superb resource you’ve compiled there.

      (Just don’t let ATOS know or they’ll ask why you haven’t set yourself up as a business so you can charge consultancy fees and take yourself off payments. 😉 )

  14. anonymous permalink

    Fuck the pre paid card and set up a business account whereby you send statements of expenditure to the L.A. every six months for auditing.

    Now how you spend the allocated money is totally up to you providing you are giving Steven the quality of life the he wants. If Steven wants to go snowboarding then take him remember all the centres in your area have closed down. That leisure time should be included.

    Do you have liability insurance for employees?

    Also Care Providers charge a fortune to have your loved one hang around dribbling, incapacitated incarcerated and dehumanised.

    Please stop trying too hard to save money and remember how they just throw it at corrupted Care Providers who do not come under such scrutiny on how they really spend the money on a service that the L.A. are paying for. Likely is that they set up companies and operate from abroad thus saving loads through tax invasion…….

    How many deaths by indifference?

  15. Sally permalink

    Am I alone in not feeling excited/thrilled/challenged by personalisation, but rather frightened/exhausted/worried/furious? Look at the insane amounts of work Mark has had to put in to a pretty basic sensible package allowing Stephen to be cared for, and have some interesting outings while Mark can work part time or have “Time off”.Who, who, is thrilled by the idea of an enormous unpaid job dumped on them forever in order for their LD son/daughter to have a reasonable quality of life?

    I feel as if we parents are sleepwalking into a minefield, lulled by all the spin put on this. Iggy’s excellent article points out the missing part. People with LD are terribly vulnerable to exploitation. They have very limited abilities to make decisions about their finances or to prioritise what to do with funds, and usually very reduced ability to deal with problems and change decisons in the light of them. They might be being looked after by someone either exploiting them or not able to really decide what’s best for them any more. This is obvious but so much of the spin assumes that the LD are able to do all this. Our pleas for the LD to be given a say have been used against us.

    Anybody supposed to be taking over those decisions for them, must be under constant scrutiny, any arrangements must be reviewed and questioned-politiely, but questioned they must be. Whoever has made them.On the grounds of the person’s wellbeing, NOT what keeps the HIlingdon manager’s in tray tidy.
    Well and good. But who is to scrutinise? The whole system assumes there will be lots of social workers/other clinicians who will be responsible for checking that things are running well for the LD person and that the DP is being spent in a way which is working, to have a look at the people spending it and make sure that all’s well there.But there aren’t. Its a phone call occasionally, usually by Accounts.The assumption the whole idea rests on is false.

    Mark, Mark here’s an idea. How about we parents in each Borough doing this are paid? Then there’d be a job description, regular hours sick pay etc. Advantage for the LA-they’d be fully enntitled to call and hector us if we didn’t get our forms done. Advantage for us, being paid, perhaps in house training and qualifacations just like any job etc. Silly to train lots of people in seperate sessions, silly and expensive for lots of seperate arrangements made for the same swimming trip, so how about parent employees come in to a workplace to avoid all this doubling up.?Then we could pool resources, have social contact, do that training, arrange group outings regular or special and save a fortune while getting lots more done. We’d all be happier too. We could even get a sign and put it on the side of the building-the Department of…oh, hang on…

    • Liz. permalink

      I don’t want to be paid, and I certainly don’t want to work for the local authority. I don’t want to be harassed, ignored, dismissed either. What I would appreciate is some sensible and helpful support – a reliable person I could ask about difficulties who might actually know the answer, and systems that stood a chance of working. Other parents/carers are the best source of support and information, but it shouldn’t be down to us to fix what is going wrong.

      Most people with LD need a lot more care than is ever going to be covered by their “Personal Budgets”. Why isn’t that ever openly acknowledged? As carers we do the best we can, save the public purse a fortune and should be trusted until it is proved we shouldn’t be.

    • anonymous permalink

      No you are not alone. Yes unpaid is correct. Yes parents need to be recognised as potential employee should they have/want this option, imagine the transformation this would be all round…..

      Stop thinking about shareholders who abuse the system and start thinking 21st Century and not 19th century poor law…..

  16. Weary Mother permalink

    Sally spot on as usual.

    Our son’s and daughters are seriously learning and otherwise disabled. If they were not they would not get any support at all? People with moderate needs are in the main, now excluded from support. Yet they are ‘treated’ by the Adult services as though they have full capacity. They do not. It is bonkers. It means they are being given responsibility for resolving all kinds of things that they do not comprehend. And this can be/is abused when others and families raise concerns. They ARE wide open to manipulation at present for they are being exposed to so much change and to so many new and randomly recruited people.. They must wonder just who their friends are?

    Re: Contract monitoring etc. Before our LA handed all his care to an agency, it was at same time as Winterbourne scandal broke, I wrote to the Head of Adult Care asking for a copy of their Care contract monitoring process and the quality and safety measures. I also asked who had responsibility for monitoring these new care contracts. I got a terse response saying ‘of course we monitor’, I asked again. Similar response. Went to MP, asked same through him. Then got long irritated letter from Head of Adult Care stating same again, that they ‘had a monitoring process’, and if I wanted anymore info to go to Freedom of Info Act, etc. I contacted Care Quality Commission re same, and was told that the LA response was probably because they did not have discrete quality and safety measures in place. I still have no idea how this LA monitors it’s contracts with agencies.

    Out of the many, minor to life threatening, issues that have occurred out of this contract, we could suspect that little if any monitoring happens?

    How the heck are direct payment personalised families going to succeed in monitoring all these discrete/fragmented services, if powerful LA’s can fail so spectacularly and so regularly ? And who is responsible when directly purchased things go wrong?

    .

  17. lisa permalink

    Mark you write very well and are a very funny man. Ive been chuckling away at your other blog thing ‘vamping’. An excellent account and extremely funny. You and Stephen are the tops.

  18. Gary permalink

    Just Discovered your blog wish i had discovered it a year ago might have been able to advise on how to deal with a care company that had over charged me £300 per week for the last 2 years plus.Yes idiot managed to trust someone after having the figures back up by my Social Worker who i thought i could trust.Went down the complaint line and sure now that their are lots of carpets full up with this complaint swept under them. Care company removed my daughter from her home and then started on me to make me look like the bad man.Took it to the Ombudsman waste of time the carpet is now even fuller.Where do i go next battered and bruised and now even more of a bastard after a educational fight i had when she was 16 of which we won.

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