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Tell Me Why – I Don’t Like Tuesdays

December 11, 2013

Tuesdays are starting to piss me off. It shOuld be a good day. It’s my day off work. I get two hours in the morning whilst Steven is out swimming. And I get two, interrupted hours in the evening when he’s doing his music DVD session. Time to switch off and have some “me time”. Well, that’s the theory.

Yesterday, I was up until midnight trying to deal with all the bureaucratic bullshit that is part and parcel of being a carer. And that was after spending the four hours free time up to my eyeballs in the tasks.

First task was to try and sort out Steven’s council tax. Hillingdon don’t want to acknowledge that Steven is disabled and therefore qualifies for a “severe mental impairment” discount. The December payment, astonishingly was debited from my account (even though the council tax account is in Steven’s name) and was more than double what I’d been paying at the flat. I checked with them and he has to apply for this discount. The social worker has written to them, I’ve sent them the psychiatrist’s report, I’ve shown them the court judgment from 2011 but none of these things are considered suitable as evidence of disability. Stalemate.

Next job was to try and sort out a threatening letter from the tax office, informing me that I’d underpaid the support worker’s NI contributions up until October. I’m sure that I haven’t. But you try and get a full breakdown from the tax office and how they have calculated this debt – they can’t do it. So, how can I pay a bill for £265 from the direct payment account when I’m not sure what I’m being charged for. Another stalemate.

I took a short break to order Steven some new socks and try and mend the new hoover which someone has carelessly broken. Steven likes new socks for Christmas as it puts him on a par with Mr Bean.

The next big job was to complete the Court of Protection annual review form. This is the first one I’ve had to do since being appointed Steven’s property and affairs deputy. It’s a scary form because the whole tone is having to prove my suitability as a deputy. And I’ve got to write reams about how Steven’s damages have gone down in order to set him up in his new home. It’s quite tricky trying to condense all the twists and turns of Hillingdon’s machinations over the housing situation, into one half page box.

And that was my day off. Council tax, direct payments, the tax office and the office of the public guardian. All because I’m the father and carer of a disabled man. Good job I didn’t have any plans.


From → Social Care

  1. Shirley Buckley permalink

    Mark I am twentyyears ahead of you in the battle. You cant win – eventually they will accuse you of being incapable of looking after Steven, probably due to psychiatric problems, when they have worn you down with their imcompetence. Believe me Ive been through it all, plus tens of thousands in solicitors fees. Dont let the buggers get you down!

  2. Weary Mother permalink

    Ditto Shirley and Mark

    Hobson’s choice at present..

    We have choice A:

    My son was encouraged, rightly, over 20 years ago to seek a life of ‘independence in his own accommodation’. With rare short respites where things have been OK for a few months, we have lurched and staggered from crises to crises with increasing mental health sapping anxiety. A bone crunching grind of complaints processes, snails pace Ombudsman and accompanying communication with tardy solicitors.. And now we have dodgy assessments, hacked and dangerous support and a revolving door of any one from the job centre home support carers. So we old(er) parents are as ever, always vigilant, always tired, and ever increasingly anxious. For we do it all and at a distance ………………..and with no rights at all. And of course there is the ever present nightmare of the the what if .?………………………… Future .

    Or choice B.
    We keep our adult son/daughter at home and are derided for keeping them ‘safe’, ‘in ankle socks’, and dressing them ‘like their elderly father/granny”. etc etc;. restraining them away from real life and all risk and reality etc. But with this ‘choice’ B (usually based on what parents see when others have made choice A) comes all the every day, day by day, life and health sapping disrespects, no respite, management of ever ending documentation and muddles by the benefits agency, A revolving door of carers, and all the other minute by minute day by day demands that come with our loved unique, disabled child etc etc etc.

    Plus,………… the ever present fear of the what if?……….Future.

    We need a Mandela?

    • Sally permalink

      There’s an idea that its good for a person with LD to be out in the community, that he/she will then magically learn to cope with society and that society will become used to them. As ever, its a worthy concept, which is now used to justify the withdrawal of support services. I don’t believe that rattling around alone is good for LD people , that they will absorb coping/social skills in the process (usually the extreme difficulty in being able to do anything of the sort is, you know, part of the condition) and that society will warm to them automatically. (Hate crimes? Our Mayor describing them as cornflakes at the bottom of the box?)
      Both A and B sound unworkable, brutal, insane. I reject the soft soap of praise for carers which they throw out occasionally to molify (“We applaud the carers…you do such a good job…we know its difficult for you., que sera sera..)
      A Mandela, yes, and we also need a history and identity. Right now we are an isolated,scattered group of “poor dears” who seem to be going on about the rights of a group of people the trendy and successful would rather not think about.

    • Weary Mother permalink


      The need for a Mandela for us and our sons and daughters shouted out this week when I saw planes full of our present and past leaders all queuing up to salute a man who fought to end segregation in his country. Am I missing something here?

  3. Sally permalink

    It is extraordinary that your mountains of convoluted paperwork/calls/emails/record keeping, sapping your energy and little bit of free time are meant to be part of the “new Choices” and freedom you and Steven are now to enjoy.What a con!
    You are clearly doing admin work which used to occupy dozens of paid staff.The new system is only promoted because it saves a fortune. Your doing what was a paid employee’s job, is presented as improving your life.A Choice.
    Last week I had one day with a mountain of paperwork-including some very painful reports-and dealt with three calls from three different services, each calling to tick us off. Where were the monitoring sheets? Where were this quarter’s expenses forms?Where were the so and so forms? “It has been decided” to take my son off the so and so allowance.Had I not read the report?
    I spent the day in tears feeling an utter failure that due to my poor admin and monitoring skills my son would miss out . I spoke to a friend who works-she had been up till 2 am on similar forms. This isn’t a yearly effort-this is frequent.
    Every single parent’s meeting I go to I raise the matter that parents are having admin tasks dumped on them which used to occupy entire departments, and if they don’t/can’t perform the work unpaid the disabled miss out. (Have any fellow parents every been asked if they are willing and able to do the admin? We could all be drunk, insane, absent. Too bad.). I am only ever answered with a smirk, or the suggestion that “uour social worker” could help. But we no longer have named social workers-indeed many LD people are not eligible for disabled services any more. They must call social services and negotiate things themselves. Social services don’t have named social workers either. I say that if a LD adult could call a Government department and negotiate help, they wouldn’t be in need of all that much assistance. Another smirk.
    I have to say that even in the Pantheon of appalling Borough services for the disabled, Hilingdon sound especially vicious.I am sorry about your ruined time off.

  4. I have just read your article ‘jargon replaces language’ in October issue Shropshire Disability Network – what a brilliant reflection. I wanted to tell you so I visited your blog and read ‘Tell me why I dont like Tuesdays’. You got me thinking on your behalf. The definition of disability is long term adverse affect on day to day life – ok – Steven has (or had) a psychiatrist, social worker, support worker (probably other community involvement) AND carer which tells me its not just you who thinks and can explain why he has a disability and its long term and adverse affects.

    Hillingdon have a duty of care and to prove they are not discriminating by not treating a disabled person any differently to someone without a disability. Would someone without a disability have all those people involved in their day to day lives?

    Just a thought. p.s My viewpoint is based on being a student nurse with an undiagnosed learning disability and carer of husband and mother in law.

  5. Erika permalink

    I stumbled upon your blog a few weeks ago. I live in San Diego California and have a nine year old daughter with autism. Your words and your honesty have been so comforting. We Americans believe in magical thinking– my entire family is sending good thoughts your way. You are a great father and caretaker and you deserve a break from the crappy ill treatment that you have been subjected to. Best wishes to you Dont let the bastards get you down.

  6. Sally permalink

    Mark! Did you see in this week’s Private Eye’s Rotten Boroughs section an article about Salford Council titled “No Respite?”
    As a Christmas present for disabled children/young adults and their parents their Mayor has decided to close a much loved local respite centre. The children if under 14 will be farmed out to foster carers if over will be sent to an adult care home. Of 27 parents comments, 26 were vehement protests, one was positive about the changes.The one single positive email was read out at the meeting to close the Respite. The mountain of parent protest letters weren’t mentioned. It reminded me of Hilingdon’s PR newsletter skipping over their closure of day centres and the storm of parent protests and negative media coverage, to quote a single unnamed parent who apparently said that now that respite was cancelled for her daughter “every day’s a holiday”
    Have the councils attended the same training on this? We should be told !

  7. Liz. permalink

    Just read your comment on Twitter re Council Tax. It is outrageous that compensation paid by Hillingdon is being clawed back by Hillingdon not to mention that they seem to be disregarding Steven’s disability.

    Under some circumstances, funds “administered by the Court of Protection” come under disregard rules – surely they must apply here? Any chance one of your legal helpers could look at that? In theory, the OPG ought to know – but not always easy to get an answer from them.

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