Where Personalisation Fails (Part 73)

Yesterday, I nearly did a complete u turn in my “Push for Personalisation”. Since we moved last November, I’ve put an incredible amount of energy into trying to secure Steven’s support package so that it is the very essence of what Personalisation is meant to be about. Being in control. Tick. Choice. Tick. It’s still a long way from being realised and yesterday I got to the point of asking – “what’s the bloody point?” Will it make Steven’s life better? Not really – his life is pretty good already – this personalisation plan is more about clinging on to something that already exists as its foundations are very fragile. Will it make my life any easier? No – quite the opposite. It will involve far more time and energy from me. It’s about two things really. One – a possible futile attempt to secure Steven’s present and future in the face of constantly changing processes and cuts. Two – it’s an ideological drive on my part. Cut out the middle men making huge profits off the back of Steven. This is also showing up as futile as well – I’ve got rid of two middle men, only for two more to instantly step into their shoes. This is Planet Social Care – there will always be people in for the fast buck.

I received a letter from HMRC yesterday – a penalty notice for “not submitting a fully completed return” last year. £800 fine. First I’d heard of it. It’s far too complicated and boring to go into all the details but last year I collected a long paper trail of correspondence and phone calls trying to get the necessary forms the HMRC require. It was impossible. In the ned, I submitted the P35 and sheets of all the detail that would have gone on a P14 if HMRC had supplied them. I spoke to a woman on the phone yesterday and she acknowledged that I had submitted all the information they need but not in the correct format. My only option now is to appeal the penalty and that will stop more accruing and she will send me all the forms out and we’ll have to start all over again. How I find the £800 is anyone’s guess. The direct payment account won’t cover it. I certainly don’t have the personal funds to repay it.

Let’s just remind ourselves why I have to manage a payroll and received direct payments. It’s so Steven can go to the gym and swimming. It’s so Steven is supported at home whilst I’m at work. It’s so I can have four hours off from caring every other Monday. To achieve that fairly simple level of “personalisation” is fraught with obstacles and needs triathlon type energy resources.

I get sort of two hours free on a Saturday evening. I say “sort of” because Steven does a two hour music dvd session and he often needs help cueing up the tracks – “Dad – want Kid Creole, singing Annie I’m Not Your daddy?” “It’s on the blue one Steve – press ‘down’ nine times and then press ‘enter'”. I had plans for my two hours last night. Not big plans. I was going to rewatch Field of Dreams – my favourite film. I’ve been flagging with all the effort of securing the personal budget and needed the uplift of hearing Shoeless Joe say “If you build it, he will come”. I had to forget all that and concentrate on the appeal letter instead.

I’m not ashamed to say that I cried. Tears of frustration. Tears of entrapment. Another precious two hours wasted having to try and secure an illusion. The illusion of Personalisation.

8 thoughts on “Where Personalisation Fails (Part 73)”

  1. Mark, I am so sorry. This process is surely, inhuman and supremely unjust?

    My grand daughters are avidly reading ‘The Hunger Games’. They, explained the plots to me the other night and I have only an approximation of the analog(ies)?. The books are about power and control? They are about the have and the have not. The books are about , a cruel, sadistic, unfairly balanced, competition for the fundamentals in life? I may be wrong, for the girls are so gripped by these books that they talked at the same time, so my apologies to the author if my shallow understanding is wrong.

    In the ………. forum, there has been a discussion by a number of anonymous carers, (anonymous for fear of repercussions?)on how difficult they feel it is to obtain a fair assessment of needs and support; and that it all seems to be a subjective chance, lottery. They then, those who can and/have the where with all – the energy, resilience and knowledge etc, can appeal and win out a bit and get another assessment. Then when this trial fails (and as in our case support is reduced on appeal) the resilient etc can look for a Public Law solicitor, then if they find one (and still have resilience etc etc,) can seek legal aid. The still resilient etc etc, have already left the frail and the dont’ know how to’s, well behind in the support race/competition. They just go under. Thumb down? Then if they (initially resilient etc), still have health and breath left (and even more know how) from dealing with the ongoing care crises, etc etc, they can go through long long weeks and months of LA/legal aided wrangles…till the ‘court door’ decision, or Judicial review. That is if they are still standing/have any life to speak of, mental health or friends,………. left.
    This is all familiar Mark?

    The weak compete with the strong…hoops on hoops, trial on trial, year on year…………….in a continuous struggle ……. just to retain the fundamentals of life. Or have I just lost the plot?

    1. Hello Weary Mother.What a wonderful and perfect comparison to describe the Personalisation process and the trials and tribulations Carers are expected to battle out ! Mark is not alone. I watched the Hunger games with my Grandson recently and I was gripped . I did not make the connection until your post .’Yes I do feel we are in battle and if Mark is a ‘tribute ‘ he must surely win in the end .

  2. I’m really sorry that you have been broadsided with a horrible tax demand which will involve endless calls. letters, anxiety, while you are in the middle of arranging Personalisation. (Which has involved endless calls, letters etc etc) You don’t deserve this..

    I was sitting back trying to figure out what is missing.(Why don’t we all live next door to Jane Young?)

    For me its the confidence that engaging with any worker or agency will end up helping us.

    For example:Right now we are having crises with our son’s behavior. I’d love some help, its damn near unbearable. OK. If I call the DCT I will
    Have to explain everything to a duty worker-Borough “doesn’t do”named workers.
    Fear my parenting/time management/self being criticised. Not that parents are perfect or don’t get depressed but I resent the inference that if we all just cheered up and pulled up our socks we’d be managing whatever it is beautifully, certainly no need for any help.
    Fear my description might end up as part of a rationale for my son being only offered far flung accomodation one day down the track.
    Fear that I will be told I need a break-so should simply apply for funding, get it, interview candidates, hire them keeo the logs don’t forget tax and THEN have a nice relaxing couple of hours!
    Fear in short that the contact will just dig us into a deeper hole. Yet we need help.And letters arrive every week asking for logs, forms etc or announcing service changes (cutbacks).

    Hold on, Mark!

  3. When it gets to the one-damned-thing-after-another stage, I think we all end up weeping. Tears of rage, frustration and disbelief about how unnecessarily and stupidly hard it can get. Then of course you pick yourself up and get on with it.

    So sorry you are having such a bad time.

  4. When I see a new post from you in my inbox in the morning it’s the first thing I read. I’ve come to care very deeply about you and Steven. I wish fervently that you and Steven lived here in Ontario, Canada. How VERY different your circumstances and treatment would be!!!

    I have disabilities and am well supported. I am very grateful. My daughter was autistic as a result of severe brain damage and was also supported with programs available to her. None of those endless forms!

    I wish I could send you money to help with the charge but my bills are just covered. Curiously though, how much is 800 pounds in Canadian funds? And I will add this: there are plenty of readers of your blog who will undoubtedly send a few pounds to you to pay that damn fine, not for you, but because they’ve had enough of the government’s bullying too!!!

  5. “Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.”

    Simon Brisenden (1989)

    Your £800 fine is yet another reason to refuse personalisation. One arm of Government hammering you for trying to help another arm of government run things at lower cost. Just another excuse for clawing back money – or gouging it out of you.

    Although I have a nasty feeling this is going to be imposed on all parents of children with disabilities in future. The new EHC Plans actually have a process step called ‘My Budget’. Unlike Statements, the EHC Plans are not concerned purely with needs.

    Having got this budget malarkey in on the ground floor, as soon as a child is diagnosed with high needs, what do you think your chances, as a parent, will be of EVER escaping it this side of the the grave? Be afraid. Be very afraid.

  6. Don’t give up! You’re not only fighting for your own sake, but for all those who have to endure the system and don’t know how to make it work for them. We went through an appeal for our daughter to have a statement, it was a horrid process. But now we know what to do and say and can help those who are unable to engage with the system themselves. Your blog is extremely valuable to me and to many others … thank you.

  7. Thing is, LB… systems shouldn’t be so dense, confusing and plain unpleasant that only parents with high levels of competence, drive and determination can get through them to obtain the things their family members are *entitled* to.

    And people whose parents or other family members who aren’t so endowed shouldn’t be at the mercy of the pot-luck of happening to come across someone who can help.

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